Jordan had his 26th transfusion of platelets yesterday, and his 19th transfusion of packed red blood cells today. Monday's LDH level was 4,000 (200 is normal); today it rose to 7,662. In the spirit of knowing the enemy, here's a little about lactate dehydrogenase, LDH. It's one of a group of enzymes found in the blood and other body tissues and involved in energy production in cells. An increased amount of LDH in the blood may be a sign of tissue damage and some types of cancer or other diseases. More specifically, a substance released by tumors and found in the blood. So, we're sending our prayers up, asking for it to go down.
In another twist, the doctor now says that the pain is probably due to the rhabdomyosarcoma, or whatever it is, rather than the Neupogen injections. It has lasted too long and is too intense to be attributed to typical Neupogenic bone pain. The last injection was given a week ago. Unless there is a change for the better, we won't be able to make the trip to Seattle.
Our friend, Jane, came up with a brilliant idea though. Telemedicine! This is the 21st century, docs, act like it. and get connected - by phone, video, satellite, Skype, whatever it takes. Harness the e-miracle of e-medicine for Jordan, and for e-veryone. Like, tomorrow morning, please.
Jordan was diagnosed on Jan. 10, 2008, after five long weeks with an unknown, untreated, life-threatening illness, which turned out to be metastatic alveolar rhabdomyosarcoma (mets ARMS).
Bonnie
Hello, I am Bonnie, mom of Jordan, who was born 3/16/82. Thank you for your visit, and please drop in again and again.
Jordan
Until 12/07, Brianna and I were living and working in China, with big plans for the future, when wham! out of nowhere, everything changed. My job now is to rub out rhabdo. Many thanks to all who are in the trenches with me.
Brianna
Hi, my name is Zhou Xui Qiong, but most people call me Brianna. Jordan and I were married in China, 9/19/06. We welcome you to our site.
7 comments:
Sound great and it would be a lot e-asier than getting there. Is is a silly billing issue, that he has to see Jordan in person? Seems like the e-medicine is a much more e-fficient way to deal with someone so sick and they could have done that weeks ago. If that is not possible,would Angel Flight, be a possibility? Our prayers are with y'all , we love you all !!!! May an E-solutin be found Quickly!!!! Love, your Mom and sisters in FL
Jordan and Brianna spoke to the doc for the first time this morning about an electronic consult. As we fully expected, his immediate response was negative (it always is). He usually thinks awhile before coming around. For instance, last Feb., when we asked him to call a specialist, he said no, he was too busy. He came back 15 minutes later and reported on their conversation.
The Angel Flight option won't fly (they checked on it yesterday, would have done so sooner, but again, doc said no, go commercial if flying). They require 7-day notice. Billing isn't a problem as far as we know, we're willing to pay for the consult out of pocket if necessary. But the discussion hasn't yet reached that point.
However, it'll take more than one little "no" to dissuade us from pursuing an electronic consult appointment.
Yes!!! I have never understood why all doctors who have specialties aren't just telling our closer, hometown docs what to do, why travel in this modern age? I know a couple of ladies who live around here that would have died had they not traveled to California for treatments---why not just tell the Doctors in Wenatchee what to do?
Hear, hear, I concur with all of you! Don't accept a "no", this is too important. I think sometimes egos (doctors) get in the way of progress. Love to all of you. Louise
I am praying for you guys, and I think I will add in a prayer for doctors with wisdom.
Liz
Hey Jordan! I sent an email so you should get it pretty soon! Where they heck are those sweet pictures from??? That place is awesome!!
Keep us posted on your blog, because i'm not going to be visiting at the hospital any time too soon. At least not as a visitor. Our prayers are with you.
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