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

It was a rough day. We are right now at Children’s Hospital, we came in this afternoon at 2:30 and by 5:00 she was admitted as a patient.

We are in our own private room in the oncology ward - not because she is sick, or because they are thinking it’s definitely cancer (still on the table though), it’s because there are so many kids sick with the flu and H1N1 in the other part of the Peds wing. It’s nice because they are very private rooms, and very comfortable and “homey”.

I took my daughter Amanda (13 yo) to the doctor last night [Feb. 6]. She had been complaining of a sore calf for the last 2 weeks. I (we) assumed it was a pulled muscle, and told her to take it easy - she was still walking around and wasn’t limping, but we didn’t notice she was walking on her tiptoes on that leg (long pants...). Yesterday, she came to me and said, “Mom it’s starting to hurt REALLY bad, and there’s a lump....” Turns out there was a lump there, and it’s been getting bigger over the last week or so (at this point it’s slightly oval and at least 2 in. in diameter!). At the doctor’s office we were able to get her in to get an ultrasound before the techs left for the weekend. I saw the ultrasound, but don’t know what I was really looking at - it seemed the mass was pushing out in between her calf muscles so its origin was deep - like next to the bone itself. After the ultrasound my daughter got nervous and confessed there is a lump on her hip that’s been there for some time (a few months???) - it’s much smaller, but it’s there.

[WHY don’t children tell their parents these things? I can’t tell you how frustrating this is now.]

Anyway, the doctor ruled out infection, and a blood clot, and they mostly ruled out a pulled / torn muscle (it would hurt WORSE on her toes if it were the muscle), but they can’t give us a diagnosis at this point at all. They are scheduling her for an MRI (of her leg & hip) first thing [February 8], we need to schedule an appointment with our reg. doctor ASAP for a referral to an Orthopedic Surgeon. If the MRI doesn’t give us more of an answer she will need a biopsy.

We’ve ruled out the “easy” stuff, and there is no history of trauma to the area either! This leaves a few VERY scary diseases - two that are cancers that primarily affect children her age. Combine that with the fact that her doctor’s are flying “half-blind” with only familial medical history of her father (I’m adopted), and it necessitates they treat this as if it’s a cancerous growth until they rule that out.

My daughter is normally a nervous person (like her mom), so please also pray for her to have strength, and not to worry. I’m trying VERY hard to be brave and strong for her, I’m praying with every other breath at this point.

Thanks to everyone for their prayers over our family. I know so many others are going through their own problems. Please know, you all remain in my thoughts and daily prayers.

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]

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