Flashbacks

At the end of "our" corridor there's is a panoramic view of Bergen city. But if you don't look that far, you look right down on the children's hospital. In the summer of 1995 we spent two weeks there with Geir Espen, after he was diagnosed first with Addison and then with diabetes. He was just 2 weeks short of turning 13, and facing a lifetime of giving himself shots several times a day. We were all terrified, but in need of putting on a brave face and assuring him and ourselves that we'd get through this together. The following 17 years we went back for frequent check-ups, first to the children's clinic, and later to the regular clinic, and went through countless emergency hospital admissions.

I looked back at some of the blog posts I wrote 4 years ago, when Sigve was here for the stem cell transplant, and noticed that at one point I visited Geir Espen in the ICU at Stord hospital on my way back to Bergen to visit Sigve at Haukeland. We certainly have spent a lot of time in hospitals over the years.

Today has been quiet and peaceful. Sigve had a good night without any fever, but he keeps waking up because he needs to fill those bottles, so he doesn't get the deep restful kind of sleep. 

This afternoon they started the last dosage of chemo, and it is set to flow in over 24 hours. Today's visiting doctor estimated that he will need to go into isolation some time tomorrow or Wednesday. 

Sunday and Monday

Yesterday, Sunday, was a generally good day, after a strenuous night. During the night Sigve's temperature rose, and he got those frost rushes that really shake your body. The night nurse claimed she couldn't find any blankets or extra duvets, which of course is crap. He got a hot water bottle, that was it, and didn't help very much, and she went off duty without even telling anyone what Sigve needed. We complained about this to the day staff. When the day nurse came, she really took hold of the situation, got him his big woolen sweater, woolen socks and an extra thick duvet, and raised the temperature in the room. So when I got there, he was feeling a lot better. He had a big lunch, and then Hilde Marie and Leon came to visit too.

In the afternoon Hilde Marie and I put together a food list with food that we are convinced is the best diet for a cancer patient: no sugar, no gluten, lots of vegetables, pure protein sources, no prefabricated stuff, just to mention some, and it was accepted. It remains to be seen if they manage to follow it up. Regular hospital food complies with official dietary guidelines, and we don't really agree with all of them. 

So last night, in stead of sandwiches he got smoked salmon and scrambled eggs, yummy and healthy. 

Last night was a good one, no temperature, but with all the fluids Sigve receives, he wakes up every hour to fill a bottle. Frequently interrupted sleep gives reduced sleep quality. Then in the early hours of morning his temperature rose again, and he also had a very low blood count and platelet count so they gave him refills of both. All this made him very tired. When Hilde Marie, Leon and I arrived around noon, he was still asleep. We woke him up, got him to put on his hearing aids and glasses, and that increased contact with the world worked wonders. During the next hours his temp sank, and the rest of the day was good. 

Today's highlight for Sigve was when Leon, 

on his arm, smiled many big smiles at him.

These days Helmer can't visit; Sigve can't leave the room and children between 1 and 14 are not allowed into this ward, they are likely to bring contaminating diseases from kindergarden and school. This is hard on both of them, they have that very special bond.

An important part of Sigve's treatment is rinsing his mouth with Caphosol 4 times a day to prevent fungus infections in the mouth cavity from the chemo. This worked very well last time, he had very little mouth soreness. Hoping for the same result now.

Hangman is busy these days. Sigve gets fluids most of the time, and antibiotics, and today there was the blood and platelet refills,  and then the chemo from 4 pm. Hicky has 3 valves, and all of them were in use a lot today.  

I'm grateful for the enormous resources that our society spends on trying to save Sigve's life. 

Chemo day 4

Sigve didn't sleep very well last night, his temperature went up again, and he was freezing a lot. Eventually blankets, hot water bottles and rising the temperature in the room helped, but when I got there around noon, he was still very tired. So I stayed for a little while, and then set off to explore an alternative lifestyle fair. 

I took part in a session of sound therapy, which was awesome, and relaxing. Listening to tibetan gongs and sound bowls, didgeridoo, tiny bells, drums, chanting, conks and a lot more was like bathing in sound. As our bodies consist of 78% water, it has an amazing ability to receive vibrations. Like acupuncture that stimulates the body's energy flow, vibrations can affect the body circulation, loosen up tension and blockages, and help relieve stress. I felt really refreshed afterwards. 

Back at the hospital Sigve was feeling a lot better, he ate well and his temp was back to normal. So it looks like the new antibiotic is doing it's job. And still no side effects from the chemo. We like :-)

Later Brita, Ketil and Kari Anne came to visit, and we got a phone call from Paul, Jorge and some of the gang who had spent the day in Barcelona, on their Mediterranean cruise, the one that we had planned to be on too. 

Still looking good, and smiling :-)

I'm grateful for distractions :-)

Some commotion

Just after I arrived at the hospital today, Sigve started running a fever. He had been warned that an infection might be on the way as his CRP (C-reactive protein, an infection indicator) had risen from 43 yesterday to 58 today. 

So when his temperature quickly rose to 39C/102F, there was a bit of a commotion. His doctor and nurses came in. A biochemist (with two students in tow) turned up for blood culture tests, one from each arm. Apparently the clue is to test blood from different areas of his body to better pick up on where the infection is. Afterwards a nurse drew more blood from Hicky. There is always a danger of infection in Hicky's entry or exit wound, so she did a bacteria test from around the exit hole, although it looks peaceful at the moment. 

Sigve is already on preventive antibiotics, but now they're being changed to a more broad spectered kind. Due to the fever he is now in isolation.

This photo shows Hicky's exit wound. The entry point is under the bandage on his neck. Hicky is used for everything that needs to be administered intravenously, and for blood tests. 

A little later two doctors came in and said that one of the patients in the room he was in the first two nights had tested positive for whooping cough, so Sigve had to be tested too, and he will be given preventive treatment. 

Sigve's appetite is still good, and he's feeling ok, but more tired. Otherwise things are going mostly by the book.

* * * * * 

Receiving a leukemia diagnosis and having surgery 

is not exactly the way you want to celebrate a 59th birthday

(which was on Tuesday).

However, this is:

Together

Sigve was given chemo from 4 pm yesterday afternoon to 10 am this morning, and then again from 4 pm today until 4 am tomorrow. He hasn't experienced any reactions to the chemo so far, no nausea, and he feels fine. 

So Hilde Marie, Helmer, Leon and Britt (Jon Helge's mom) came up from Tysnes today, and we all spent a lovely day together. Being together is our most important activity now. 

I'm so grateful for our family, immediate and extended :-)

A slap in the face and a shot in the back

Sigve has been diagnosed with cancer, again. This time it's called Acute Myelogenous Leukemia (AML). "The word "acute" in acute myelogenous leukemia denotes the disease's rapid progression. It's called myelogenous leukemia because it affects a group of white blood cells called the myeloid cells, which normally develop into the various types of mature blood cells, such as red blood cells, white blood cells and platelets." 

Rapid progression is the key word here. This cancer has developed over the last month or less because a month ago Sigve had his 4 year check-up including a bone marrow test, and nothing abnormal was found then. 

Sigve, Hilde Marie and I had a meeting with the doctor today, and were told that there is a treatment, which will be tried. It's a strong course of chemo, designed to kill off the cancer cells, knock out the bone marrow, and then let it rebuild itself, and if it works, all is well. There is a slight chance that this will work, otherwise there would be no point in even trying. But, and he stressed this, the chances of success are very slim. If unsuccessful, it's a matter of giving a milder, slightly life prolonging and palliative treatment for however many months it may take. 

Time is of the essence; he was transferred to Haukeland Hospital on Monday, tests done immediately, the diagnosis confirmed and Hicky, a Hickman catheter was surgically inserted on Tuesday, and treatment started Wednesday. 

A week of chemo, 18 hours pr day. Towards the end of the week his immune system will be so low that he will to go into isolation for 2-3 weeks. Infections will occur, and be treated and hopefully fought successfully. Only after that time will we know if the treatment has been successful.

I am grateful for an observant doctor at Stord Hospital who suspected that something was not right, and did the necessary tests. This condition enters the acute stage when the amount of immature blood cells are at 20%, Sigve is at 59%.

These are the hard facts. Turbulent times are ahead of us. We appreciate the love and care that we know will be coming from around the globe from so many dear friends.

A new grandson

We are very happy and grateful 

to announce the birth of our second grandchild.

At 2948 grams, 49 cm, 

Leon was born around 9 pm on August 28.

Everyone are doing well, 

including the proud grandparents :-)