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  • Written Jul 29, 2012 10:51pm

    We lost John at about 10:15 pm on Wednesday, July 25. 

    Please join us next Sunday. 

    Come help us celebrate the life of John Clauson. We will hold a ceremony and celebration at the Number 4 rapid on the Arkansas River at 2:00 pm. We very much welcome anyone who would like to say something about John to speak briefly at this event. Please brings chairs and/or blankets if you would like a place to sit. This will take place in an open dirt area by the river. Dress is casual. 

    One thing we would like to do as part of the ceremony is put flowers into the river for John. Please bring flowers if you would like, and we will also try to have extras for anyone who forgets. 

    It could be hot (or cold and rainy) so please try to come prepared for various weather conditions. Good things to bring: water or other beverages, rain jacket, umbrella, and sun protection.

    After the ceremony you are welcome to join us at Deanna and John's house in Buena Vista for a "steak-out." Two great pleasures in John's life were great steak and well-brewed beer. So please bring your favorite cut of meat to throw on the grill, your favorite beer or wine or other beverage of choice, and a chair. (We'll have some extra chairs for those from out of town.) We will provide sides and non-alcoholic beverages. Please don't feel like you have to join us for this part, but anyone is welcome. 

    Directions to the location from Buena Vista: 
    Take Hwy 24 North for approximately 9 miles. Between mile marker 201 and 202 take a right (East) on County Road 371. Shortly before this turn you will see a sign for the Railroad Bridge. Cross the river, then turn left on the dirt road that parallels the river going upstream (also 371). Continue on the road to the parking area. This road is slightly rough but is still appropriate for 2-wheel drive vehicles.

    Directions to Deanna and John's House: 
    410 California St. 
    Buena Vista
    From the Number 4 rapid, head back to Buena Vista and take a left at the only stoplight in town. After 0.2 miles take a right at Colorado Ave. Continue on this road until Colorado Ave. turns into California St (the 3rd block). The house will be on your right. Brown house with green roof. 
  • Blasts down

    Written Jul 16, 2012 11:53am

    Good news this morning. The blasts in his blood are down. They've gone from 8% to 7% to 4%. There are a lot of reasons this could be happening, but we are going to take this as promising news, just for today.

    Also, the CT scan of his lungs showed a possible absess in his lung, which could be causing these new, high fevers. Once an absess is sort-of walled off, it is very hard for antibiotics to get in there. A cardio thoracic surgeon is going to consult on it today. There is talk about possibly taking out his left middle lobe entirely. This is a major surgery though so much to be considered and we really don't even know how much of a possibility this is until meeting with the surgeon.

    It would be a very big deal to remove part of his lung but in all relativity something that could easily be lived with. Plus, I figure then I might almost be able to keep up with him when we're hiking or skinning. Ha, yeah right.
  • This Week in Review

    Written Jul 15, 2012 12:31pm

    Some highlights (not all actually highs..) from the last week:

    Mark donated his white blood cells twice, Monday and Thursday. He is donating again tomorrow.

    On Tuesday, Docs gave John a tracheotomy so that the ventilator tube could go straight into his trachea instead of having the tubes going into John's mouth and down his throat. This is really common once someone has been on a ventilator for more than about two weeks and isn't ready to come off. This meant that we could stop all sedation, which is much better for John. It also will save his throat, mouth and vocal chords. He has been able to slowly come out of the sedation this week and has been so much more aware and active and has been able to start PT.  He is able to mouth words to us and has started writing bits on a whiteboard and the ipad to communicate as well. Yesterday, the PT folks had him sitting up (for a couple minutes) for the first time in over 3 weeks. He was exhausted afterwards. He was moving his legs more than ever yesterday as well.

    Also on Tuesday, John got a bone marrow biopsy. This was the rather gigantic piece of information we had been missing to see if the 4th round of chemo put John into a temporary remission and had stopped the leukemia from growing in his bone marrow. It had not. He still has leukemia in his marrow.

    On Wednesday they started a drug called Vidaza. It is a different type of chemo in that it is epigenetic therapy (trying to retrain/reset the genes) instead of kill off all your cells like traditional cyto-toxic chemo. This drug is used in patients who are too weak or old to receive traditional chemo but it also sometimes works in people who have been non-responsive to cyto-toxic chemo.

    This choice also works because all other types of treatment at this point would be too aggressive. We are in a tough place because we desperately need his white blood cells to come back in order to fight this pneumonia but all drugs to fight leukemia drop your counts. Vidaza also does not drop your counts as much as most other chemos, so we're hoping for some sort of happy medium.

    The ideal situation would be if Vidaza started lowering the amount of leukemia in his marrow and blood and then some of his good cells could actually grow.

    While he gets the Vidaza and we see if it's working, he'll continue getting donated white blood cells and he may actually go from getting them 3 times per week to 5 times per week.

    John has been fighting high fevers all week, which were originally thought to be a response to the donated white cells (granulocytes). When you have an infusion of immunity like that, you get a sudden immune response - like your body recognizes the infection all over again. So fever, inflammation, additional mucus, etc. But he hasn't had any granulocyte infusions since Thursday and last night he spiked high fevers again that have continued all day today. So, of course, there are lots more tests including a CT scan of his lungs and abdomen a couple hours ago.

    In other "typical John Clauson" news, we found out that the type of pseudomonas bacteria he has in his lungs is not the same as the other cases they've had recently in the hospital and is not one they usually have here (we already knew it was one of the most anti-biotic resistant strains of pseudomonas).  This pseudomonas bacteria in his lungs has also morphed and become resistant to one of the antibiotics they were using (Zosyn). Luckily it is still resistant to two others. The Infectious Disease doctor told me he thinks John has the record for the year for the number of "anti" drugs (antibiotics, antivirals, antifungals) one person has been on at once. Neat. They also have almost never put a patient on dialysis and Vidaza at the same time, so between the nephrologist, the bone marrow doc and the pharmacist they had to figure out all sorts of changes to the dosing. Of course. OF COURSE.

    They did find blasts in his blood today, which is news we've been dreading hearing each day because it means the leukemia is advancing and possibly quickly. However, we are assured that sometimes this happens when marrow starts actually producing cells as the marrow sort of "spits" everything out, even if the levels of leukemia are dropping. But not really any guarantee that this is good news. There is also the "weekend phenomenon" where often the pathologists see blasts on the weekend and they are gone once the weekdays roll back around. Seriously, no lie. Straight from Brunvand's mouth.  

    As Dr. Brunvand also said, you need two points to make a line and today is only one point. So we will see what we see in the blood over the next few days to get a better picture of what is happening.

    I keep starting to write these posts intending to do some short, bulleted list but that just never seems to happen.  To make myself feel better, here are a few:

    What else?

    • After much time and devotion here, brother Dave and birth mom Stephanie both left on Friday.  They'll both be back soon.  Elaine was here a long time and Andrew and Carrie also visited.
    • During this whole time since John went into the ICU, we had the use of a wonderful house north of DU. This was amazing since we had a lot of family in and out. It also allowed Kai to stay down in Denver with everyone so I could see him too.
    • Kai met with our psychologist here and she says he's perfect. We knew that already though. Seriously, we're on a good track and I felt it was important he begin to develop a relationship with her. John and I have spent a lot of time talking with her (lots before he got the pneumonia) and she was actually the one who encouraged him to start writing to Kai, which he did a lot of before he got so sick. We love her and I continue to talk with her regularly.
    • Mckenzie's mom Judy lives very close to P/SL and has been so gracious with her home, her time and her energy.
    • Mark and Chris continue to be here all day every day (and sometimes all night) to nourish us with their love, their devotion and good food. Mark is John's watchdog and it's hard to drag him out of the room.  
    • We had a crazy-cool-amazing energy/connection/I-have-no idea-what-to-call-it session with old friend Megan Eggers. I feel so blessed that she spent time with John and feel she truly helped him find something he was looking for and reconnect with us and this journey and himself.
    • We have also had some Reiki sessions that were really special, connecting, weird and emotional. Each has been fitting and come at the right time.
    • We are so thankful to have such supportive friends and family. One night Mark and David ended up having some beers with several nurses from the ICU and they said the incredible, wide, strong support system they see for John is rare. 
    One more announcement: there is a benefit for us this Sunday, the 22nd, at River Runners in Buena Vista. It's a Silent Auction plus music plus beer (plus a little good juju from the river?) to help us out.  We are in awe that so many are doing so much to help us.  It goes from 5-9 pm but there is also a float from Wilderness Aware down to River Runners beforehand. Drop your boats at WA, park your car at RIver Runners and take the shuttle from River Runners back to WA at 4 pm. There is a tiny thought about Kai and I being there. I am so hoping to get him on the river. But this will depend enormously on John's status for the day (which seems to change by the minute) so chances are not high. I do think Mark and Chris and kiddos and perhaps my parents and Kai and maybe John's brother Dave will be there. Here is the link to the event on Facebook (you don't have to be on Facebook to look at this). Again, we cannot believe the good will and love coming to us.

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