Back on Feb. 6th, a time we called our day of desperation, Dr. Z. walked into Jordan's hospital room with a bombshell of an announcement. "I may have to transfer you to Ohio for treatment," he stated, setting off waves of confusion and panic within us. We flew to the phone and the computer in search of treatment options closer to home, only to be encouraged to remain in Boise after all. Seven weeks later, no one so much as batted an eyelash today upon hearing that Jordan may be sent to confer with a sarcoma specialist in Seattle. This time, we are more than ready and willing to go! A consultation with a specialist is far less daunting than being packed off for months and months of treatment in a faraway place, and we have felt all along that we need a specialist on board. So, on Monday, when Jordan goes in for a bone marrow biopsy, we hope to learn more about this possibility. They couldn't recall the Seattle doc's name, only that it was Douglas something or other. A few minutes alone with the internet, and I think I may have found him. Could it be Dr. Douglas S. Hawkins? Stay tuned, for we shall soon see.
Jordan has been especially weak over the last few days, and he continues to be able to eat very little. He's lost another ten pounds, down about 30 pounds since Jan. He has one small mouth sore, and is in the midst of his first brush with thrush. It's in his mouth, and according to the doctor, it could very well be in the esophagus too. He started taking an antifungal, Flucanazole, and from more of our internet reading, he'll try to add a bit of unsweetened yogurt to promote the colonization of helpful bacteria that antibiotics often, or maybe always, destroy. Lots of antibiotics and a weakened immune system make candidiasis almost a given. The doctor also told us that he thinks he's figured out why Jordan was in so much pain last week. It was the Zometa. Humph! He wondered aloud if the high calcium reading was a mistake. Our feeling is that it was not. The calcium level slowly rose throughout the week. Now if the blood chemistry tests had been done every day, we could be certain, with no need for second guessing. We prefer a closer watch on all these crucial blood chemistry, and whatever else they're called, levels. Take LDH for example. We don't understand all we'd like to about it. We do know that when it rises, it's bad news, and when it rises a lot, it's really, really bad news. Oh, I hope that isn't too technical for anyone. Last week, it was at 1100. Today, 1584. Normal is about 200. That's bad news.
Jordan located one of his former role-playing buddies earlier this week, so he, Brianna, and Shane, along with the found friend, Ryan, and his wife, Audra, all enjoyed a six-hour escape into the world of fantasy games this evening. They plan to get together for another round of fun next Thursday. But next up on his agendum, Jordan gets two more bags of platelets tomorrow. They were down to 15K today. Hemoglobin was at 9.4. A little lower, and he'll be needing a serving of packed red blood cells along with those platelets. WBC's are abysmal at .1. We hope Neupogenn does its thing (stimulating WBC production), minus the bone pain!
Thursday, March 27, 2008
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4 comments:
Sounds like a specialist might be a great idea. Whatever you decide, we'll keep praying it is the right decision for Jordan. Glad to hear Jordan is enjoying some "fantasy time", we all need that once in a while, especially when reality isn't going so well! We're pulling for you Jordan, keep fighting!
Love,
Kent and Louise Andersen
P.S. I have to be especially careful with my typing now that my eldest daughter is critiquing me!
I am watching you mother so mind your P's and Q's!! I so hope for the best for you all, and if the specialist in Seattle is the best I hope for that. Keep on plugging away everyone--this is just all future material for your inspirational book.
About the thrush/candidiasis... You may already know all this, so if you do, I apologize in advance... Taking probiotics (in the form of capsule, yoghurt, or kefir) would be a good idea. Homemade kefir is the best option because it has some 30 different strains of friendly bacteria and yeasts, and the friendly yeasts can help in keeping the candidiasis in check and can help improve the immune system. (Ask me how I know. :))
Another possibility, one which I've just begun to explore and don't have any experience with yet, is natural leaven bread (sourdough is one type, from what I understand). Natural leaven bread is more easily digestible anyway, plus it also has friendly bacteria and yeasts, so can also help with immune system and candidiasis.
Email me if you want more information, like links to websites and such.
We're still praying for Jordan.
Laurie / quidscribis from Nauvoo
Becky and Louise, you two are such characters ... characters I am grateful to call friends.
Laurie, I'd read about the yogurt, and sneaked (snuck?) some into those smoothies and the soup I made. But I didn't know about kefir, and hadn't thought of probiotic capsules. THANKS.
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