DSRCT

DSRCT

About this blog

In January of 2006 my wife was diagnosed with Desmoplastic Small Blue Round Cell Tumor, also known as DSRCT, which is a rare and extremely aggressive form of cancer, usually with poor prognosis for survival.

After months of extensive chemotherapy, several operations, and more chemotherapy we thought she might have an actual chance of surviving. After two weeks of cautious hope our world was destroyed yet again when a scan showed that new tumors were growing in both lungs. There were no more medical means to cure her disease, and eventually she died on January 9th 2007.


To help others who are in a similar situation, my wife and I made this blog, where her entire treatment course is described in detail as a kind of diary. The blog also contains a short description of all the medication that has been part of the treatment.

January 29th, 2007

DiaryPosted by Jacob Juhl 2007-01-29 20:58:03

It has now been three weeks since Mette died, and life is slowly starting to return.

I have always loved life, as did Mette, and I choose to be optimistic about the future, despite our misfortunes. The kids are reacting in a healthy way to the loss of their mother. Marie, 2½ years old, doesn't quite understand where her mother is, but she has gradually stopped asking, and now seems satisfied to know that mummy is in heaven. August, almost 6 years old, seems to have an understanding of what it means to be dead and also accepts the explanation that Mette is now an angel, that occassionally looks down upon all of us, and wants us to be happy.

I just started work today, parttime, and I think I will enjoy getting back to business, and wrap my mind around something else.

I haven't mentioned this before on the blog, but we were moving from one apartment to another in the weekend just before Mette's death, which of course made things a little more turbulent. To be honest I'm now quite happy that we did so, because I think it makes it easier to start again, to create a home for me and the kids. In the past couple of weeks I have slowly been finding new places for things, furniture, lamps, pictures, to make this us a home, where I decide how everything looks and feels, but where Mette is present. I have put up some photographs of Mette in the kids' rooms, which they seemed quite pleased with, and the lovely paintings Mette made have gotten a prominent place on the livingroom wall.

To some people this may sound like I don't mourn or whatever, but I am starting to see a light ahead, and I am confident that I can make it as a lonely parent, that the kids and I will be allright. To me it was actually a lot harder to witness Mette's deteriorating condition in the last month, than it has been to rise again after her death. There may be hard times ahead, ups and downs, but right now I feel strong, and I choose the future!

Love, Jacob

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January 16th, 2007 - the end

DiaryPosted by Jacob Juhl 2007-01-16 21:22:23

On friday, January 5th Mette suddenly felt terrible pains in her lower back and was driven by ambulance to the hospital. During the weekend they tried out a lot of theories to try and explain the pains. On monday they decided there was probably blood in the same lung again, and rushed her off to Skejby Hospital to get yet another drain.

Monday night, January the 8th, the drain was inserted, but the doctors discovered that Mette was bleeding internally all over, and as her lung capacity was now dangerously low, Mette's mother - who was present at the time - was told to call in the nearest family in a hurry, as Mette's body was about to give up.

I arrived at the hospital a little after midnight. Mette was heavily drugged and was gasping for air. She had seemed unconscious for a while, but woke up shortly when I arrived. I talked to her and held her hand, told her I loved her, and that the kids loved her too. She very clearly answered "Yes" a couple of times, but other than that she didn't speak. Her breathing gradually became worse during the next half an hour or so, untill it finally stopped, and Mette left this world for good.

...

Dearest Mette, I loved you more than anything.

Though you didn't really believe in the afterlife, I hope we will meet again somewhere, and I sincerely hope you are still able to look down upon the kids, see how well they are doing, see how they grow up, see how they will always keep a part of you alive within them.

Love, Jacob, your husband and friend.

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January 4th, 2007

DiaryPosted by Jacob Juhl 2007-01-04 20:19:29

Mette got a new new lung drain on the 30th, a very large one, to try and drain the coagulated blood and the remaining fluids, and was sent home immediately afterwards. In the last couple of days she has been out of breath as before, and in a lot of pain because of the drain tube, and there doesn't seem to be a lot of fluids to drain out anymore.

So today, on January 4th, the drain was removed, and the doctor decided not to put in another one. Because of tumor growth however, more fluids will probably be produced in the lung, and if Mette starts to feel the effect of this, she will have to have another lung drain. Not anytime soon, we hope!

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December 29th, 2006

DiaryPosted by Jacob Juhl 2006-12-29 21:19:48

The morning after Mette came to Skejby Hospital she suddenly started running a fever that reached 40,2 degrees Celcius, at which point it was decided to drain some of the fluids in her lung to relieve some of the pressure. After a couple of hours her general state was more acceptable, and today no more fluids came out through the drain tube. An ultrasound scan showed that there were remaining fluids, but that they were hard to drain out.

We were informed that excessive fluids will probably keep emerging in the lung because of tumor growth, so the doctors may want to insert a permanent drain tube tomorrow. If this works out fine, and Mette doesn't run a fever again, she can finally come home!

Having a drain inserted is a pretty painful affair, so by now Mette is back on Oxycontin and Oxynorm painkillers, which she will probably keep taking for the rest of her life.

I guess this long process has come full circle, as Mette is now almost as sick as when she was first hospitalised in January and is back on the same painkillers, in the same amount, as when this whole thing started.

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December 27th, 2006

DiaryPosted by Jacob Juhl 2006-12-27 19:36:44

Mette slept all night with no problems until 5 am, when she woke up in a lot pain and had trouble breathing. During the day she was x-ray'ed to see if more blood was filling the lung, and unfortunately it turned out that she was now bleeding in two places, both the top and bottom of the left lung. She was hurried through more scans and was moved to another hospital (Skejby Sygehus), where they specialize in lung surgery. They plan to give her a lot of transfusions of something that will help her blood coagulate better, over a couple of days, and then drain her lung. They hope that by then her blood will be able to coagulate enough to stop the bleeding.

Let's hope so...

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December 26th, 2006

DiaryPosted by Jacob Juhl 2006-12-27 19:30:20
Today the lung drain was removed and Mette quickly started feeling better. She gets antibiotics now to get the fever down, and they want to keep her for at least another day to make sure she is fine.
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December 25th, 2006

DiaryPosted by Jacob Juhl 2006-12-25 20:16:29

On the night of the 23rd Mette started running a fever, and as always we had to call the hospital to try and figure out what needed to be done. Naturally they wanted to see her, but Mette was afraid they would keep her over christmas, so she almost made them promise that they would let her go home on the 24th, no matter what.

Mette was x-rayed, and a large amount of fluids was seen in the left lung again, perhaps even more than was seen on previous x-rays. Mette refused a drain right away, because it would prevent her from going home on christmas eve, so she got a lot of antibiotics iv during the night and on the morning on the 24th, and could go home again.

We celebrated christmas eve (-danish tradition) at Mette's parents' house, together with Mette's sister and her husband and daughters. It was a really good experience, and I know Mette wouldn't have wanted to be without it, although she wasn't well at all, and although she wasn't able to dance round the christmas tree. It was sad to see her sitting on the couch, totally out of breath, while the rest of us tried to have a good time, but when the kids got their presents she was in a really good mood.

During the night she had severe problems breathing. Every time she tried to lie on her back she felt she was choking and started to panic. So this morning we called the hospital again and said that Mette wanted to come in and let them drain her lung. A lot of blood was drained out, and she was given a new load of antibiotics. Tomorrow she will probably come home again, but it worries us a great deal that her lung has filled with blood only four days after the latest drain. If the bleeding doesn't stop by itself I really don't know what can be done.

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December 22nd, 2006

DiaryPosted by Jacob Juhl 2006-12-22 16:58:17

Today our doctor wanted to find out what had caused the excessive bleeding, so Mette was CT-scanned. The results came as a bit of a surprise, but not a complete shock: there had been tumor growth in both lungs since the last scan (-the tumors have doubled in size in eight weeks), and new metastases have appeared. Apparently one of the tumors had started bleeding, but it could not be discerned whether this was caused by the Sutent pills or not. Because of the tumor growth and the bleeding our doctor strongly recommended that Mette should stop taking Sutent immediately. She had two more blood transfusions, a bag of painkillers, and was sent home for the christmas holidays!

We are a little bit disappointed that Sutent didn't work, but nothing really gets to us anymore. We know which route Mette is taking, we just don't know how long it takes to get there. But now we have decided that this f***ing disease will not be allowed to destroy our christmas!

Merry Christmas to all!

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