update

This round of chemo's done.  Jo's having some issues with nausea so is staying one more night to get it under control and should be coming home tomorrow morning.  And that's what I know :)  We took her some Chinese and soup tonight, which was fine.  She was looking tired, but well and that's a plus ;)

VERY quck update

Jo's in hospital.  They've already started chemo... this is way better than past times where she's in 24 hours before they even begin...

I worked 10 hours today in a town 1:15 minutes away and didn't get home until 8:00, so I'm going to bed.  Sorry I don't have more of an update, but I've only checked in with them a couple of times...

All was well.

Jo was given five days of Freedom on Tuesday and she's made good use of it (except Weds nite when we went to the ER ... and that was good use, too, on the one hand). We picked up Ciera on Weds afternoon (she's such a good little 'ppplllleeeeeeeese?' beggar ;o) and she was to spend the night. A little mishap w/Jo caused Jo's PICC to bleed and, since it was under the tegaderm bandage, I couldn't tell where the blood was coming from, so off we went to the ER at the beginning of our snow and ice that was falling. As Jo said, it was the easiest trip to the ER we've ever had, but b/c of that, we were there for a long time just to have them tell us it was the skin that was torn and the PICC was fine (since she wasn't having chest pain, they took their time getting to us). By this time, the blood had come out under the tegaderm where the tubes are and was it was also drying under the tegaderm; plus, they had pulled the top part of the bandage loose in order to look at the 'tear'. They said, "It's okay; just a skin tear. You can go on home now and follow up with your doctor at your Friday appointment." I said, "Well, couldn't you clean that up and put a new bandage on it?" The nurse looked at Jo and said, "Would that make you feel better?" Jo said, "Well, yeah, actually it really would." I'm sure she felt like saying, "Duh!" The snow was really coming down when we left, but there wasn't a lot of traffic and we took it easy getting back. Dan had come over to get Ciera but had stayed to talk to Gary and he called to see what was happening. I told him we should be leaving soon so he stayed and Ciera got to stay with Jo after all. We took her home late Thursday b/c of Jo's appt on Friday (which was changed to later in the day after all), then picked her up again late Friday afternoon. She stayed w/us until Saturday afternoon ... Jo went to Kara's and met up with her cousin, Tara and Tara's husband, Joel, and spent the afternoon with them; then Saturday night, she went out to dinner with her 'adopted' sister, Sharah (yep! Kara, Tara & Sharah all in the same afternoon!) She came home last night saying she'd had one of her best days ever! (Thanks, everyone!!!) Today, she went with her brother, Andrew, to her dad's to watch the best ever football game with her dad's family, so I'm sure she's going to have another great day (unless the Bears lose, then that will be a bit of a downer for her ... she has her nails painted in alternate blue and orange, wearing an orange long-sleeved tee with a Bears short-sleeve tee over that, blue pants & socks ... no one will ever know she's pulling for the Bears, will they?)

On Friday, we went to the clinic for the dreaded "play with the PICC" session; however, God in his goodness stepped in and the tech got blood from the PICC (both lines) on the first tries. We wonder if the 'pull' on the tubes on Weds night didn't loosen whatever was keeping the PICC from producing. The tech gave me saline flushes and heparin flushes for yesterday and today in the hopes that will keep them open for the chemo tomorrow. Once again, we don't have a time to be there. Our instructions were to do what we always do. But, this time I will CALL the hospital before we go down there to see if they are expecting us and, if so, what time (and if not, what time). If they aren't ready for us, Jo can wait here better than she can down there.

I did the research (through almost 2200 pages) regarding the doxyrubicin. Dr. Godwin was right; according to the nursing notes and the list of medications on each visit, Jo had two rounds of ifosphomide where she did NOT have doxyrubicin. In reviewing everything, it appears that the seventh round of chemo was only doxyrubicin, but we didn't do that round. We believe that the reason we were told she could have only one more dose then she'd be at her lifetime max is b/c with the 7th round, she would have had 750 mg and the avg lifetime max is 880. Since we didn't have the last round, we believed she could only have one more round. We think what Dr. Godwin did was the Body Surface Area calculation for Jo, which at her age, wt and height would be 1188 mg. She's already had 600 mg, so that would leave her 588 mg and (continuing at the 150 per session that she had previously) would leave 3.92 doses; ergo, his saying she could have 3 more sessions of doxyrubicin. We should see him at the hospital in the morning and we'll give him the info we've collected and discuss it with him further (he'll be glad he was right and we were wrong :o)... dr's are like that, don'tcha know).

I don't know that we will have access to a computer in the hospital, but Kara will know what is going on; hopefully, her schedule will allow her to drop a note here. She will be much better at providing information in a more concise manner, I'm sure ;o) Thanks again to all of you for your prayers, assistance and kind thoughts. God is great and God is good ... Always!

Take care & God bless. Our prayer today is for courage tomorrow and the rest of the days of this round of chemo ... Our verse to remember is Deuteronomy 31:6 "Be strong and of good courage, do not fear or be afraid, for the Lord your God, He is the One who goes with you. He will not leave you or forsake you."

It's Mom ... Went to Dr. Godwin yesterday; he's as befuddled as we are w/regard to the CT results; he's going to contact the radiologist to see if he can't get some clarification on sizes, etc. In the meantime, we had the EKG and Echo done and those results looked good. The place on Jo's right thigh is better, but still oozing; since yesterday was her last dose of the IV antibiotic, and since the chemo drops her immune system drastically, we will wait until Monday to start the next chemo treatment. ~ We questioned Dr G further on the use of the doxyrubicin since our info indicated Jo could have only one more dose before she reached her lifetime maximum (since it's very hard on the heart; Jo had already expressed this concern over the phone, but we weren't satisfied with his response). He said he had calculated it and she could have three more doses. In further conversation, he agreed that possibly his calcs were wrong and she could have only one more. He still wants her to have this one dose (tho I don't understand the benefit of the one dose) and that we'd go back to the ifosphomide or a substitute drug (something like doxelle) that's like doxyrubicin but he wanted to go back and check the records again before deciding. I'm to send him whatever I have that shows she had more than 4 doses before (Jo said 'trust me- I had six rounds of chemo w/both the ifosphomide and the doxyrubicin ... I was there." So, I'll get into our records and find the 'proof'. ~ For now, Jo is feeling pretty good. She's hopeful of getting out to do some things before we go back in on Monday. Altho she's still on oral meds and we're doing wound care on her leg, she is no longer confined by Home Nursing. Now, if the weather would just cooperate (which doesn't seem likely for the next couple of days.) ~ Thank you for your continued prayers and support. Take care and God bless ... (Psalm 71:5 "For thou art my hope, O Lord God; thou art my trust from my youth." and Matthew 6:34 "Take therefore no thought for the morrow; for the morrow shall take thought for the things of itself."

Talked to Dr. Godwin late yesterday afternoon. He said that where we are in the process, we could expect one of three things: no change; growing; mixture. He said we're in the mixture category; some are worse, some are better. Said the radiologists who did the CT didn't give him measurements, so he couldn't tell us definitively on same. He said they "clearly" weren't a lot worse; that he believed the ifosphomide had given a good result, but not good enough. He wants to switch to doxirubycin beginning next week. Jo and I have a concern over that one b/c it is hard on the heart and when she had her original chemo treatments she could only have one more dose before she had reached her lifetime maximum. She expressed this concern to Dr. Godwin; he said we would have echogram done before then (it is now, in fact, scheduled for 4 pm tomorrow) and we would review it before beginning the chemo treatment. Presuming it still shows she has good heart muscle and all appears to be well, we will begin the treatment on Weds (it will be same as before; 3-? days in the hospital). He said they'd drip it very slowly and monitor it very closely and, if there appeared to be any problem arising, they'd stop it immediately. (Jo's heartrate is already higher than normal and the supposition has been b/c there's a large tumor resting on the pericardial; I expect to question him further in our appt on Tuesday. We will also question him further re her PICC line since before she's always had a port. They have been having trouble drawing blood through the PICC; when she had the port, they couldn't do the chemo unless they could get blood return through the port.)

We continue to drip the IV daptomycin and do her oral medications (which includes the potassium 'horse' pills) and will administer the last of that on Tuesday morning. We will see Dr. Godwin Tuesday afternoon. At this point, I don't anticipate renewing the IV, but I do believe they will continue the orals that she's on. Over the past couple of days, she has had some chest tightness on the right-hand side (yesterday she said if she had a cough, she might think she had pneumonia). However, she says it isn't 'different pain' than she's had before; it's just different in that it used to be there only when she rolled over in bed-now it seems to be there all the time. She doesn't feel it's anything to go in for right now and we'll talk to Dr. G on Tuesday, unless, of course, it gets worse and then we'll go to ER or Prompt Care if it isn't during normal business hours. (She knows her body very well and is always intelligent about going in when she needs to, so I usually leave those decisions to her.) We have been taking it easy inside away from the cold and wind; reading a lot, watching a few movies; and today, admiring the sun shining on the heavy frost that's coating all of our trees and bushes. We had some anxious moments Tuesday and yesterday regarding whether Kara would get to work and back without accident, but God is faithful and watches over all of his flock. We are truly grateful for his continued care.

One of Jo's favorite Bible verses: Philippians 4:13 "I can do all things through Christ which strengtheneth me." One of mine: Matthew 7:7 "Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you." Please continue to hold us up in your prayers and we shall do the same for you. Take care and God bless ...

Saw Dr. Allan this morning; basically, he said, "why are you here?" He doesn't feel the place on her thigh has anything to do with surgery and, therefore, doesn't know why we would be sent to him (again...he saw Jo in the hospital when we were there last). He did show me a different way to take care of the 'wound' and he will contact Dr. Godwin to tell him he doesn't see the need for him to be involved with this particular problem. So, the only thing we know from today's appointment is Dr. Allan has a different way of treating the wound than Dr. Godwin AND Dr. Allan doesn't see any need for surgery on the injury site (which we already knew from the hospital visits.) I believe Jo and I will start a day-time "soap" opera ... Dr. Godwin told Jo she was "lucky" when he didn't have an answer for why there were no CT results on Thursday, so Jo feels the name of our show has to have "lucky" in it (Lucky General Hospital? As The Luck Turns? Luck of Our Lives?) ... I think we'll just start a contest and let others submit a name ... we could have a hit on our hands!! As always, thanks to all for prayers and good thoughts. God bless ...

CT results

Doctor didn't call regarding results today.  We picked up the hard copies and we're pretty sure that he didn't call because he's having to talk to the radiologist about why they didn't follow orders.  They were SUPPOSSED to compare the new images to the October images... i.e. compare each tumor to the sizes in October.  They only did that for ONE of them (the largest one in the lungs).  No mention of the biggest one on the pericardium, at ALL.  So we really don't know anything... the one they did mention had grown slightly.

In other news, we'll be seeing Dr. Allen regarding the seroma tomorrow morning.

No other updates for now. It will be next week before we can figure out why there was no mention of any other of the tumors in the CT report. 

Hope everyone has a great weekend :)

Thurs 1-6-11 (From Mom) We met with the doctor today, but the Koke Mill people (where the CT was done on Monday) haven't read Jo's CT yet, so the dr didn't have any results to go over. We are to call him tomorrow afternoon as he is trying to get the results tomorrow morning. In the meantime, the 'lump' on Jo's right thigh has broken open and is draining; we need to change the bandage three times/day (I was only changing it twice, but I couldn't get them to look at it on Tuesday when we were there for the blood draw). The dr told me to get a bottle of saline for cleansing the wound and, tho I asked him twice about needing a prescription for the saline and he told me both times I wouldn't need one ... yep, you guessed it. I couldn't get the saline w/o a prescription ... so I'll have to try to get a prescription tomorrow morning and get the saline. He gave me a "flush" syringe at the appointment today, which I will use for tonite's change before she goes to bed. Jo has actually had two good days yesterday and today ... as she says, "good days are better than okay days ;o)". She is scheduled to take the IV antibiotic until Jan 18th and Dr. Godwin said he wanted to wait until she's finished with that before we start any other treatments no matter what the results of the CT are (we have an appointment with him at 3 pm on the 18th) ... we also need to keep an eye on the draining seroma so it will play into what our future plans will be. Tomorrow I will be calling her surgeon (Dr. Allan) to schedule a time for him to look at the wound to see if he thinks we should go in and try to drain it all at once or just let it continue to do what it's doing. If we aren't able to get the results of the CT tomorrow, it will be Monday before we know anything further on that score. In the meantime, Jo is eating good and (except for the seroma) isn't in a lot of pain, so we're very thankful for that. Please continue to keep us in your prayers and thank you for your continued support. God bless ...

Mon, 1-3-11 (from Mom) The nurse couldn't draw blood from Jo's pic lines today, nor was she able to draw it w/normal stick. I called the dr's office re same at 10:45 a.m.; they just called me back at 4pm. We had an appt at noon at Koke Mill for the CT (or so we thought); when we got there, they said our appt was set for noon on Friday; we explained the dr's office didn't call us until 2pm on Friday to tell us our appt was for noon on MONDAY; turns out the orders Koke Mill had said Monday; however, they weren't expecting us, so they had to work us in. The contrast always makes Jo feel ill, but today she also got one of the optic migrains. We had just arrived home and I had put her to bed when the dr's office called. B/c Jo feels so lousy, I told them we'd come in tomorrow. The spot on her right thigh is inflamed and 'weeping' so we will try to see the nurse practitioner tomorrow as well (Dr. Godwin is on hospital rounds in the mornings this month). Jo has taken dilaudid and is trying to sleep; that's usually the only way to get rid of the migrains. Hopefully, we will have better news tomorrow; we don't expect to have any results or comments re the CT until Thursday afternoon when we see Dr. Godwin.

As always, thank you for your continued prayers and support. You are greatly appreciated. God bless ...

(It's Mom ...) Jo had a good day on Thurs., 12-30 and a fair day on Friday; we went for a drive yesterday and she went to church w/Kara this morning. Baby steps, but we're so glad she felt good enough to get out of the house for a little bit. She's sleeping now; even a small amount of activity wears her out, but she's a trooper. The lump on her right thigh still gives her a lot of pain. She is still on daily IV and oral medications. We have a CT scan tomorrow; the insurance company still won't approve a PET scan even though that's what we need to really identify whether the chemo is helping. As a matter of fact, we are still arguing with them over payment for the one done on 10/20; the hospital wants their money and the insurance company says they have to get it from us. But, God is still in charge and He's much stronger than sarcoma, so it will work out. Jesus said, "... According to your faith, be it unto you.", so we need everyone to have strong faith and keep praying. Johnna and I wish you all a healthy, prosperous and peace-filled New Year. Thank you for your continued prayers and support. God bless ...

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.