Quick update

Hey everyone.  Thought I'd do a really fast update on my lunch break.  Bullet points:

• Jo's in the hospital (room 260 at Memorial) getting a round of Ifofsomide (I have no idea if I'm spelling that right)
• She went in on Tuesday... that same day we found out her long term disability was denied because they're considering this a "pre-existing condition" (not because of 2008 cancer but because of surgery to remove tumor last July...after the policy was already in effect... figure that one out).  REALLY don't know what we're going to do about that, but one issue at a time.
• The Ifofsomide is definately the medicine causing "the crazys" as we call them.  After one dose of the chemo this time, Jo's already pretty loopy and out of it.  And having a harder time laughing at herself about it because she's so frustrated.  She was trying to recite "Ring around the rosies" to Donn and me last night (don't ask, we talk about random things) and she couldn't get the words right... which made us all laugh but made her cry (and is making me cry remembering... because GOD she's GOT to be so frustrated!).  And then later told me that because I was working in Springfield today I could bring her some work to do... some of MY work... we have no idea why she thought she would need, want or be able to work on anything for my job... (except maybe it made sense in the jumbled mess of her brain because she convinced she has to go back to work now because of the money issues)... 
• She gets the crazies because this drug has central nervous system (CNS) toxicity as well as renal toxicity (they give her meds to help protect her kidneys on the renal toxicity, but there aren't ones for the CNS toxicity).  CNS toxicities include delirium, confusion, lethargy, drowsiness, disorientation, hallucinations, stupor, personality changes, mutism, encephalopathy (any brain disease), muscle twitching, incontinence, seizure, coma and potentially death...  As you can see from the underlines, she's experienced a lot of these already so, thankfully the next point is where we're trying to head...
• The doctor is hopeful that this is the last time she'll have to do the Ifos.  But, as mom said last post, that's going to be contingent on finding an alternative (and getting insurance to improve it.  I am telling you, I am ready to go on a freaking crusade against medical and LTD insurance companies right about now!)
• As is Par, they're not going to get out in 3 days.  They are almost a full day behind on her 2nd dose of the ifos. because they couldn't get her specific gravity (sg) down low enough after the 1st dose to administer the next (sg has something to do with her renal function so there's like a "safety" zone where it will start being worse on the kidneys if her sg is too high...)  Add to the frustration...

Anyway, that's the update I've got for you now...

It's Mom ... sorry neither Kara nor I have had or made time to post. Jo had a scan done on the 10th; we met with the dr on the 15th. The good news is the tumors seem to be staying the same size or, with some, even a little smaller. The challenge news is she can't have any more of the chemo drug (doxyrubicin) that seemed to be working. (It weakens the heart so there are lifetime limitations.) She had to have a potassium infusion on Thursday, but, barring any other unforeseens, we will go into the hospital on Tuesday morning for another treatment of the chemo drug ifosphomide ... it's the one that makes her so sick, but is usually given with the doxyrubicin. She had two rounds of ifos before the doxy this time and it didn't seem to do anything to the tumors. We will do another scan after only one more treatment of the ifos to see if it is doing anything at all; in the meantime, the dr is trying to find an alternative treatment. He was thinking about Barnes again, but they've already told us the study they are doing does not have positive results for Jo's kind of sarcoma so, unless they've come up with something really recent, that won't be an option. We are taking Tuesday's news as good news and will continue to pray for God's intervention with another drug ... or just a plain miracle, since I'm sure He's still in that business, too.


Jo had a nice surprise in the mail on Tuesday; she received a BIG packet of individual cards from her friends and co-workers at H.D. Smith. She's planning to make an 'official' thank you note, but I wanted to tell everyone how delighted she was reading the cards and talking to me about the individuals who sent them. They called it a "card shower" and it truly made her happy. So, a BIG THANKS to all who participated ... it was a wonderful idea!!! And, a big thank you to each of you who send her cards; some of you are very faithful in that regard and, believe me, it is very much appreciated. She loves snail mail because she can go back through them later and re-read them; we keep them in a special packet so she can go through them any time she wants.


Jo has been having trouble with her eyes for the past few days; she's lost all of her eye lashes so there's nothing there to protect her eyes from anything that may be passing by. She's been tired and resting quite a bit, but some of that is because I haven't been feeling well and she doesn't want to ask me to do much. Those of you who know her well know that's the way she is; even when she's ill, she's thinking about others.

As always, thanks to each of you for your prayers, thoughts and general support. We are truly blessed to have all of you as our friends and support group.

Deuteronomy 7:9 "So know that the Lord your God is God, the faithful God. He will keep his agreement of love for a thousand lifetimes for people who love him and obey his commands."

Psalm 116:1-2 "I love the Lord, because he listens to my prayers for help. He paid attention to me, so I will call to him for help as long as I live."

Latest

Just a little update:

Jo went in for her appointments this morning.  Her counts weren't good.  And she was feeling very poorly.  They went to the hospital where they did two units of blood and potassium (I don't know if they did more than that...).  They've been there since 1 and aren't home yet.  The hope is that they'll be done there at 9:30 tonight.  They gave her a bed/room instead of just a chair in the transfusion unit because she was feeling so poorly...

She goes in at 1 on Thursday for the tests to see what change, if any, has been going on with the tumors... We should know those results at her appointment on Monday...

That's what I have right now.

another update

Let's see... it's been a day...

Johnna went in... counts are really bad... she's netropenic (which means her white blood cells are very low) and her platlets are basically non-existant at 17 (low is considered around 300... and platlets help fight infection)...  She was at the hospital almost all day today doing a platlet transfusion.  They should have admitted her, technically but all the doctors and nurses like Johnna so much and she REALLY didn't want to go in... she has to go back for another transfusion on Saturday and on Monday, though.  Her nurse practioner thought she hadn't gotten her Nulasta shot (the one that boosts the immune system) her counts were so low...

The biggest issue is going to be keeping her from being exposed to any illness because if she gets ANYTHING right now, it's going to be a major deal.  And it might already be too late.  Mom's been really sick since they were in the hospital.  And Ciera's been with mom for the last few days because Daniel and Chassidy have been bouncing around to urgent cares trying to figure out what's wrong with Talor.  Who is now admitted in Peds at St. John's.  They're not certain yet whether it's just a weird virus or this new flu strain that's putting down all of Sprinfield (ER wait in the middle of the night last night was 6 hours... and it was the same at the other hospital).  Talor was so dehydrated her muscles started to liquify to provide nutrients (raising her lactic acid levels).  So they've been working to get her hydrated so they can bring down the lactic acid levels... may get to go home tomorrow, but they don't know yet (yay for all of this with no insurance...)

Anyway, if it does end up being this flue strain the incubation period is 14 days, and Jo's been around Ciera and Dan A LOT this last week... so we just don't know that she's going to make it without catching something, not with how low her counts are.

So prayers would be helpful.  She's very run down, as is mom... and dan... and chas... who haven't gotten more than a couple hours of sleep at a time for 4 days now... and ciera who is super hyper with all the lack of sleep being had by all...

So far Donn and I have avoided all the sickness, but we're also the last two who are well enough (or not sleep deprived enough) to take care of people.  And we're managing... but if anyone else comes down with this bug (which is likely with how run down they are), or mom doesn't get better soon or if Johnna starts even the slightest fever, espeically while Talor is still hospitalized, the human resources available are going to run REALLY thin...so prayers would DEFININTELY be appreciated!