Quick Update

I don't have much information to convey.  I've managed to catch some kind of cold/flu, so I haven't been around Johnna since... Saturday?  Sunday???

She went to the doctor today.  Her counts aren't great, but they were good enough for her to still be at home.  They're working on getting a CT scheduled to see if the treatments are working.  They couldn't get a PET passed through insurance.  Apparently if you have lung cancer you can get a scan every 3 months, but if you have cancer that's metastasized to the lungs, it's only every 9 months.  I guess the doctor fought hard, but it was impossible to convince the money grubbers that it was necessary to allow a PET scan more often than every 9 months in a case where the prognosis survival (without a working treatment which is what the PET tests for) was less than 9 months...

Anyway, the plan for the next week is to keep trucking as we are.  She'll meet with the doctor again next week.  We may or may not have the CT before then to make some decisions regarding treatment, but right now we have no treatment planned while she's still fighting this blood infection (she left the hospital on Thursday with Orders for 25 days of the IV antibiotics, so we're already into mid-January).  It's not our favorite place waiting on doctors and tests and medicines, but that's where we are.

Thank you all for the continued thoughts and prayers.  Obviously we're still trying to protect her from anyone who's ill as her counts are down, but we did get her phone fixed (there was a slight accident on Christmas Eve involving a four year old, a glass of tea and Jo's phone) so she's receiving calls and texts again, though not always at the moment they're made :)

I'll leave you with some pics.  I'm sure many of you have seen some of them before, but they still make me smile :)

Johnna's on the left; Kara on right

Kara on left, Johnna on right

Um... I'm not sure... maybe Kara on Left, Johnna on Right?

Johnna on Left, Kara on Right

Not sure again...

again not sure... Aunt Helen, I'm sure you'd know better...

Kara on Left, Johnna on Right

Merry Christmas

Early Merry Christmas everyone.

Today we celebrated Christmas with my dad.  It was a lot of fun, though short, and pretty stress free.  Johnna got VERY tired (even though all she did was sit in the chair, and we were only there for three hours :) ) and is home sleeping now.  She'll get up later to take more meds, but I imagine she'll sleep most of the night from now...

I'm glad for the white christmas :)  It has brought a lot of joy to my mom (once all of us got safely home :) ).  She had a good day with Gary as well :)

Home health came in today and taught mom and johnna how to do her pic infusion antibiotics.  They'll come again tomorrow to make sure they've got it down, but then they just come once a week (on Monday's I would guess because they have to do blood draws on Mondays...). 

No other news to report now.  We're still taking things one day at a time, but today was a blessed one :)

From our family to yours, we wish you all a VERY Merry Christmas.

Well today was... a journey... with a happy ending :)

Infectious disease sent not one, not two, but FOUR more doctors to badger Johnna into taking out the port before they'd release her, even though the oncologist said to leave it in.  Jo, wanting desperately to get home finally just gave in.

SO, SHE'S HOME!!!  And hopefully will get to stay here :)  She no longer has a port and has a double accessed pic line, which she really didn't want, but it was a better alternative than staying in the hospital.  She's still getting her energy back, though she ate almost all of her dinner tonight, which is a huge milestone :)  We have a big couple of days planned to see family for Christmas, so I'm sure she'll probably get tired, but a good tired :)

Thank you ALL for the prayers.  I KNOW that's what helped get her home for the holidays.  And thank you all for the well wishes and the comments, care and offers of help.  If we think of anything that will help we will let you know :)  Thank you all again.

quick update

Godwin (oncologist) said to NOT take the port out.  They will revisit the idea on Tuesday when she has another appointment with him.  Our best guess is he wants her to be able to home for Christmas and she can't do that without the port to get the IV meds from the home health nurse.  And if she stays on the IV anti-biotics until Tuesday, even if the port does need to come out, it's not critical.

SO, the plan is to get her home TOMORROW!!!!!!!!!  She had another platlet transfusion today and her rash is bad (guys, she looks like an oompa loompa...).  But nothing critical right now.  And her spirits are SO much better with the prospect of getting to come home.  PLEASE pray that the blood work in the morning shows numbers that allow her to come home and that they can get everything scheduled out with home health to GET HER HOME FOR CHRISTMAS!

correction it is CREATININE levels that are high not Criotine...

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.