The Blog and its Purpose

Hi everyone. I've started this blog to keep people as updated as possible on how Johnna is doing with her battle with Synovial Sarcoma.  Maybe at some point I can give background, but right now so many people want to be updated on the here and now and there are just too many people to keep updated individually.  I am working longer hours to be able to have more time to help Johnna and mom out, so days I work (normally Monday-Thursday) my life is VERY busy.  I'm going to try to update nightly, but it'll be just bullet points.  So sorry.  I'll try to be more indepth when I have time...

So, update for today

• Johnna's still in hospital; she has been there since Friday night.
• She has been in the hospital or at the cancer center for full day appointments and infusions all but two days from the 7th-today.
• They've been having trouble keeping her counts up
• She was in daily at the cancer center last week getting infusions of potassium and fluids
• She was in last Friday for a platlet transfusion
• She received a blood transfusion today and may receive another platlet transfusion tomorrow
• She developed an infection since the last round of chemo (which she began December 7th). 
• They figured out her infection is not MRSA and thought she'd be able to go home on home health care (where the nurse comes to give her IV antibiotics) as of this morning.  That is probably no longer an option, as described below.
• Started developing a really bad rash yesterday.
• Worse today
• Infectious disease came in and said that there's no way of knowing which of the two antibiotics they put her on this weekend she's having a reaction to.  Pharmacist thinks she may now be allergic to penicillian.  They switched her antibiotics.
• Infectious Disease doctor also thinks that the port has to come out or she'll not get rid of the infection.  We're still waiting to hear from our doctor (the oncologist) about the logistics of that, but that will probably make is so she can't do the home health thing as they were going to push the IV antibiotics through the port. 
• They are also having trouble keeping the potassium levels up.  They took her off the IV potassium to see if she could keep the numbers up with just pills.  She did not yesterday, levels crashed again to critical.  They tried again with the pills this evening, and those numbers weren't in when I left the hospital at 8:30.  The oncologist has explained that the chemo has affected the ability of her cells to absorb the potassium so her cells are simply releasing it and it's leaving her body as waste.  He also said that this isn't something that will ever correct itself or something they can do something about (like giving her a blood transfusion to improve her red blood cell count or white blood cell count).  They can keep pushing potassium, but if they can't get her to hold enough of the pills it'll have to keep being done via infusion through IV or a port.  Potassium is apparently a vital thing to prevent heart attacks and other heart issues.
• She cannot do the chemo she's been on until her criotine levels get back to 1.01.  They are currently at 1.4.  They may or may not correct themselves.  Criotine levels affect kidney and liver function. These high criotine levels are also caused by the chemo drug and are contributing to the potassium absorbtion problem. 
• She will not be doing the third round of chemo next week (b/c of current and previously mentioned issues and) because the doctors want to get some scans done to see what help the regime is having.  The side effects for chemo have been really bad and as is evidenced by the cell damage affecting potassium absorbtion and kidney and liver function, may be more harmful than not.  We will have to reevaluate when those test results get back in. 
• Johnna is VERY done with being sick and in the hospital.  We may be spending Christmas there. 

That's all I have the energy for right now.  I really don't know too much more than that, that's about as specific as I can be...so if you have questions, we probably still have the same ones.