Update: # #286 - Amanda is home! Cancer free! "Mandy"13 y.o. in need of prayer-lump on hip & ca

FReepmail from LibertyRocks | February 12, 2010 | Joya

[Quix]

THANKS FOR THE UPDATE.

PRAYERS.

[trisham]

Thanks for the update! Continuing prayers.

[LibertyRocks]

PING TO UPDATE @ #220 — NEEDING MORE PRAYERS - AMANDA’S LIVER IS NOT LIKING HER MEDS...

[I went through the ping list and I think I got out all, if not most of the duplicates. If you received two pings, let me know so I can go through and take out your second listing, please?
Some of you on this ping list wrote me privately from one of the prayer lists — you can find the most recent update on this thread at posts #95, #153(?), #216, and now the most recent at #220.
And, yet more of you are from some of my “old” ping lists, that I wanted to let know what was going on - I hope you don’t mind...]

Thanks again to everyone for their best wishes, prayers, support and love! We couldn’t do it without all of you! Amanda sends her love and thanks as well — she IS feeling good all things considered, so we take heart in that! :)
God bless you & yours,
LR

[E.G.C.]

BTTT

[Jim Robinson]

Prayers on the way.

[fieldmarshaldj]

Continued prayers for the young lady.

[left that other site]

Prayers for these Gentlemen!

And also for Mandy.

Thank the LORD for this wonderful network of Believers, that we can hold one another up in prayer.

[Joya]

Thanks. Prayers for Manda’s liver. Love and hugs.

[Fawnn]

Prayers continue....

[DvdMom]

Comments and Graphics - Layouts - Photobucket

[Petruchio]

Prayers on the way for Amanda’s liver.

[Quix]

AMEN! AMEN!

THX

[potlatch]

Prayers that all will be well with Amanda!

[Alamo-Girl]

Thank you for letting us know. Prayers continue...

[Tribune7]

Prayers continue

[Cindy]

Praying for Amanda.

[LibertyRocks]

UPDATE 2/18 AFTERNOON -- DOCTOR CALLED, INSURANCE WON'T APPROVE LIQUID MEDS - MAY NEED TO BE READMITTED FOR IV MEDS

Again, I wrote this update over at FB first, so I will copy and paste so I don't have to write this out again... Thank you so much to all my FRiends here at FR! I'm lucky to have such a wonderful "family" here - especially in times of need! Much love to all of you! ~ LR

UPDATE 3:00 PM - POSSIBLE IV MEDS NEEDED?

Amanda's I.D. doctor called me personally a little while ago...

Our Prescription Insurance will NOT approve Amanda's liquid medication - the doctor said it would approve the generic, but I guess the generic isn't quite the same as the brand-name suspension liquid, either. So, she will be staying on the pills (which she is happy about because the liquid tastes really bad).

Her doctor and I however aren't too happy about this. It's really hard to tell if the pills are working frankly - the liquid can be absorbed readily by the body, but she may not be getting enough med through her pills. She says she feels pretty good, and the edema in the lower part of her leg (her ankle) has gone away, but she has been really good at keeping it really elevated all the time, too -- so, we don't know if it's the meds working, or if it's just because it's elevated... Of course, the swelling in her ankle and lower calf going down also makes the lump that much more prominent, so it's hard to know if it's gotten bigger still, or if it's the same and just looks/feels better since the tissue around it isn't retaining water anymore!

She is still doing well on her pain meds as long as her leg is elevated. If not, she gets achy pain, with occasional shooting pain all down her leg (the mass is most likely pressing against the nerve that goes down her leg).

Plus, now we also have to keep a close eye on her liver functioning.

What all this means is that her doctor is on the fence right now as to whether to re-admit her to the hospital for the IV medication - he's kind of regretting letting her go home before they were sure they had a handle on the infection, but then she's been doing pretty well at home, so he thinks that for her mental well-being it's a good thing... If ANYTHING changes (more pain, another fever, feeling more tired, more bruising, etc...), or the mass doesn't go down within the next few days though she will be re-admitted. Same with the blood tests tomorrow morning -- if her liver numbers are higher, he will have her re-admitted. It sounded like he was on the verge of just going ahead and doing that even today, so when my husband gets home I'm going to have him look at her leg too, and get his opinion as to whether it's gotten bigger or not...

The most frustrating thing is the insurance problems -- it's rather silly in some ways. The liquid meds she should be on are $800.00/mo. and the insurance won't approve it. However, the "back-up" medication is the IV meds which are $3000.00/mo.! If she needs the IV meds it will be at LEAST a few days-a week in the hospital, and then they will need to teach me how to administer it at home, if possible. The insurance will cover the hospitalization, and the IV meds (THOUSANDS & THOUSANDS of dollars...), but not the suspension! Kind of crazy if you ask me! I just wish we were well-off enough to pay for her meds out of pocket - it's more than even our rent payment though, and there's no way we can pay that for 6-9 months! I'm praying really hard right now that the pills are working and that her liver was just "acting up" the other day. [The doctor informed me they went back and re-tested the blood from when she was first in the hospital and her liver enzymes were normal then... He also said that if the pills ARE working the higher numbers could indicate the fungus being killed off and the liver working to get rid of it, but it's a little early to be seeing that happen, especially since she's on the pill form...]

Please pray she'll be able to stay home, but that if she really should be in the hospital God will give a little nudge to her doctor, or that something minor will happen that gives us a "sign" of exactly how things are going in regards to the meds working!

The doctor also mentioned that if the meds didn't work right away we are starting to get really close to her needing surgery to remove the mass in her leg as well, which they were already considering when she was in the hospital. If it doesn't start going down on its own VERY soon, they will need to go in and take out the mass.

Sorry for such a long update that only contains a smidgen more info. than the last... The worries never end it seems. If it's not one thing it's another lately! My cold seems much better than just this morning so I'm thanking God for small miracles, now I just need my nerves to calm down! I'm not going as crazy as I was before we knew the diagnosis of course so that's good, but I can't exactly relax as all is not better yet... It's a strange place to be - not wanting to worry, but not wanting to become complacent at all! [Plus, I'm guess according to her sisters, I'm bugging Amanda too much asking too often how she's feeling! LOL]

[LibertyRocks]

Sorry to ping you all twice in one day!

NEW UPDATE - 2/18 - 3:00 pm
Amanda’s doctor called and we spoke for a while this afternoon. There is a new update with the details at Post #237 (the one from earlier today is at #220 in case anyone missed that).

We now got word back re: the insurance for her meds (denied), and discussed some of the doctor’s worries at this point (re: readmission for IV meds, and possible surgery).

Thank you so much, everyone - and like I mentioned earlier, if you are getting double-pinged, let me know so I can take off the second listing of your name. Or, if you’d like off this temp. list, please let me know...

[LibertyRocks]

Noticed I put the wrong date in the first update today — that should read 2/18 - 8:30 AM, NOT 2/16! Sorry for any confusion!

[trisham]

Amanda’s doctor sounds like a very caring and concerned man. I’m sorry that things aren’t going more smoothly, but the important thing is that her doctor is involved and on top of the situation.

Thanks for the update. Hang in there, FRiend.

Continuing prayers.