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Coal Trail - 2014, February 16 - 22:10
Bennett has really sailed through his transplant journey. We are so incredibly lucky that he really has had no major setbacks and has felt great most of the time. It is not what we were expecting. Part of that can be attributed to the low-dose chemotherapy he received during his conditioning regimen and the other part I believe is because he continues to sail through the worrisome obstacles that have been creeping up since mid-December.
I don’t know that I can say the same for Darren and I. I really don’t feel like we are sailing through lately since...
....the kidney issues began in mid-December requiring a medication to protect his kidneys from his anti-rejection drug (cyclosporin)...the two weeks we waited for the chimerism results and then found out that he was 100 percent donor cells...the week when his EBV viral load was in the extremely high zone and the doctor prepared us for a potential diagnosis of lymphoma, only to find out 2 days later that the EBV viral load had fallen dramatically....the day he was prepped for a mouth biopsy and the surgeon said, “Let this kid eat, there is nothing to biopsy, Bennett must have scared the mouth lesions away!”
I just feel that lately there’s a lot of worry for the parents. But, the saving grace is that there has also been week after week of PURE RELIEF......
and now there is the new worry this week....
Bennett was admitted back on Unit 1 on Friday. His diarrhea was not improving. He was retested for c. difficile.....NEGATIVE. Great!
He was still experiencing symptoms, but they began to improve. Yesterday, for the first time in weeks he was not lethargic, he wanted to eat and he needed to be entertained. We were feeling encouraged.
The doctors figured that perhaps the adeno virus was still in his gut and causing the remaining diarrhea symptoms. The GI doctors that were considering a scope on Friday, signed off on Bennett today and said, “He is doing great, there is no reason to believe this is Graft vs Host.” AWESOME! We started making plans to come home tomorrow.
And then tonight we were told that the adeno virus was found in Bennett’s blood. The viral load is 1.5 million. They told me that this is incredibly high. But yet again, Bennett surprises us. 3 different doctors came in tonight to look at him. They have never seen an immuno-compromised patient with such a high viral load who was bouncing off the walls in his room.
Adeno virus can cause respiratory infections (pneumonia, bronchitis), urinary tract infection, gastro (which Ben has/had), conjunctivitis. For immuno-suppressed patients these complications are expected to be severe. Bennett currently has none of these symptoms and the gastro symptoms have improved over the past 24 hours.
Bennett’s team of doctors (which now includes transplant/oncology/gastro and infectious diseases) are already working hard on a “special access” medication (cidofovir) that would be needed to treat Bennett should these symptoms appear. They actually said to me tonight “We need this medication on board should he crash in the coming days.” Yes, crash....awesome choice of words. This medication requires complicated paperwork and permission to be able to administer. They contemplated starting him on the cidofovir (worth a look on google at the side effects) tonight, but decided the side effects of the medication vs the way he was presenting tonight didn’t warrant its use. But, they are preparing to use it if they should need it, as it is proven to work in post BMT patients.
The doctors are also reconsidering the scope to absolutely rule out underlying graft vs host. With worsening symptoms of the adeno virus, the anti-rejection drug (cyclosporin/motor oil med) would be cut back significantly. And before they can cut it back, they need to ensure there is absolutely no GVHD....
All of this worry and these preparations for just in case.....
Tonight, after the flurry of doctor visits in his room, Bennett wanted to know what was happening. I explained to him that all the doctors THINK that he should be really sick, but that he wasn’t feeling really sick right now. He offered to me the following explanation.
- So mom, it’s like there are good ninjas and bad ninjas in my body.
- Yes, Bennett. 1.5 million bad ninjas to be exact.
- Then I have 1.5 million gold ninjagos fighting them off.
- Sounds good.
- I know it’s going to be a good night tonight cause I can feel my gold ninjagos slicing the bad ninjas into 4 pieces.
- Awesome, let’s go with that Ben. Slice the heck out of them and keep surprising us like you have done every time in the last two months!!!!
NMR blog - 2014, February 10 - 17:00
Review of an important new NMR technique requiring special data evaluation.
NMR blog - 2014, February 7 - 17:00
Slides of a Talk presented at a GIDRM Workshop in Bari (Italy).
Another Chance to See - 2014, February 4 - 14:27
Exciting news from the DOC blog. The first kakapo eggs in three years have been discovered by rangers on Codfish Island/Whenua Hou. The two nests that have been found so far belong to Lisa, an experienced kākāpō mum, and Tumeke who has bred before but had infertile eggs.--- Originally published at http://www.anotherchancetosee.com
NMR blog - 2014, January 24 - 17:00
Slides of a Talk presented at a Spanish NMR Discussion Group meeting.
NMR blog - 2014, January 21 - 17:00
A poster analyzing the milestones met and the challenges looming ahead.
NMR blog - 2014, January 20 - 17:00
A new approach to Magnetic Resonance Spectroscopy in medicine.
NMR blog - 2014, January 18 - 17:00
A 2012 ENC poster+talk about a physical conjecture is available online.
NMR blog - 2014, January 16 - 17:00
A nice and novel application of NMR in clinical medicine (2012 poster).
NMR blog - 2014, January 15 - 17:00
A 2012 ENC poster about quality-control using Mnova software goes online.
NMR blog - 2014, January 11 - 17:00
A 2012 ENC poster about the new Mnova software feature goes online.
Casey McKinnon - 2013, November 18 - 17:05
My buddy Jeff Cannata asked me to shoot a quick segment suggesting something awesome (a TV show, movie, comic book, etc.) in this week’s episode of his show Newest Latest Best, so here it is! I show up just after the 30 minute mark.
To see clips of my suggestion online, check it out here.
slyck - 2013, June 12 - 22:09
Pharmaceuticals suffer patent setback.
MegaUpload.com And First Amendment in the Digital Age: How Copyright Enforcement Is Threatening Free Speech And How The Constitution Can Win
slyck - 2013, June 11 - 05:29
Cyber lockers, MegaUpload, and Free Speech.
Corree&Daren - 2013, January 7 - 23:59
We are now nearing the end of Day 7. Yesterday we went to Daren’s parents for dinner. His family (and especially his sister) kindly supported us in our D-tox and we had a full spread of yummy detox friendly food that we helped cook. Salmon, quinoa salad with sweet potatoes, green onions & pecans, carrot/kohlrabi slaw, green salad with avocado dressing and beans with smoked paprika & brown rice.
This morning we had a smoothie (green tea, wheatgrass, blueberries, raspberries, lemon juice, camelina oil, protein powder). Tonight’s dinner was spaghetti with kelp noodles! Kelp noodles are great (http://www.kelpnoodles.com/). They are made with seaweed (as the name suggests). They are quite firm but soften up when in contact with acidic food (like tomato sauce).
I don’t feel too horrible. I didn’t think about cookies and chocolate that much today. Daren is feeling a bit weak and a little photosensitive (???). Apparently headlights seemed brighter than usual tonight. Maybe his eyes are functioning better now than before!
Salmon with dill, lemon and garlic
Green salad and smoked paprika beans with brown rice
Corree&Daren - 2013, January 5 - 15:50
Day 4 is done and we are now on Day 5. Our smoothie yesterday was sweeter (green tea, wheatgrass, strawberries, cherries, camelina oil, protein powder) – we left out the spinach. For lunch I had scrambled egg with chives and kale which I ate wrapped up in iceberg lettuce. Later on I made a slaw like thing with the new shredder attachment I got on boxing day for my Kitchen Aid stand mixer. It worked great! Ingredients included shredded carrots and kolhrabi, chopped red pepper, grape tomatoes and chives, sesame seeds and sesame oil. Daren brought home falafel chips and hummus, which was an awesome surprise. Today we made zucchini/potato pancakes (shredded zucchini & potatoes, chopped red pepper, garlic, onions, quinoa flakes, eggs). They were pretty tasty.
I won’t lie. I want sugar. I dream of ketchup. And chocolate. I definitely miss sugar more than I miss dairy or wheat. Apparently, after a while, the sadness and craving is supposed to pass. I’m waiting for that to happen.
Carrot & Kohlrabi slaw.
Zucchini & potato pancakes frying
Zucchini & potato pancakes ready for eating.
Corree&Daren - 2013, January 4 - 01:11
Sorry the font and formatting below is weird. I don’t know how to fix it…
Well, Day 3 of our detox is done. Right now I feel ok, but this morning I didn’t feel good at all! My tummy was rumbling a lot and….well….the toilet was my friend! I wasn’t super hungry today, but Daren was. Yesterday I had a super bad sugar craving and made a crisp with cherries, strawberries, peaches, quinoa flakes, cinnamon and nutmeg. It turned out great!
Post-baking for 40minutes at 375oC
For dinner tonight we made some tasty salmon with lemons/limes, garlic, dill, chives and olive oil.Post-baking
Dinner with gai-lan!