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 - FEB. 23, 2010
[The following was copied and pasted from a note I wrote over on my FB account a few moments ago. - LR]

Well, we just got back from Amanda's appointment with her Infectious Disease doctor. Her blood work was good. She's getting "enough" of the meds into her system for now, and the mass seems to be dissipating slowly, but surely. Just as it's hard to see your own kids growing because you see them everyday, it's hard for me to tell just how much better her leg is. The inflammation in the surrounding tissues has gone away completely - except maybe some in the calf muscle itself right around the mass, but that is to be expected.

She is supposed to start trying to walk again as soon as she can, but she has to be careful regarding being on pain killers, and not overdoing it (not feeling when it hurts). The mass is actually poking through the muscle tissues in her calf, so we will be getting in touch with her orthopedic doctor (more on that below...). She also has to be careful not to walk awkwardly or she risks hurting her knee or hip. So for going to the mall, or the library we will still be using her wheelchair, graduating on to crutches when she gets better on them.

She doesn't have to see her doctor again till around October as long as everything is progressing smoothly. She will have monthly blood tests to check the level of the anti-fungal meds in her system, and to keep an eye on her liver. She is doing really good with her pain killers -- she doesn't take them unless it really starts to bother her, so we're not worried about her getting addicted to the codeine or anything which is good, and she can continue on those as needed -- probably switching to plain Ibuprofen for swelling in a couple weeks when the mass shrinks back to the underside of the muscles.

I mentioned above about her seeing an orthopedic doctor... Based upon the X-Rays they did to check for the infection in her lungs, and head she has been diagnosed with Scoliosis. It's not severe, but one can definitely see the curve on the x-ray very clearly. Since she can't stand up straight and bend over right now due to her calf, we will have to wait until she is able to walk again to see a Pediatric Orthopedic Specialist, and get the Scoliosis officially diagnosed, and figure out what needs to be done.

While it's more than a little anger-inducing that this was not noticed before, it gives us a lot of answers as to why her back hurts so often (her posture while drawing isn't helping -- making it a lot worse probably). We already knew she was "hyper-flexible" like me (meaning her ligaments are almost too loose and things move around alot and the nerves get "rubbed" by her vertebrae, another example - on our "pointer" fingers we can bend the tip "up", or backwards).

I don't know much about scoliosis although I think I remember my back doctor mentioning I have VERY slight scoliosis (less than Amanda's curvature for sure). So, that's something I'll need to learn more about now. Since she can't be seen right away we have a bit of time to find a good pediatric orthopedic specialist as well (even if we have to travel to Marshfield). [We might just call up the orthopedic doctor she saw in the hospital, or get a recommendation from him (he's older and has a very thick German accent which Amanda can't understand well (I have no problem understanding him) - a good doctor you can tell, but very serious and quiet -- Manda is sort of scared of him! LOL But then he did manipulate her leg a lot, and it was hurting really bad at the time, so she's probably just mad at him! :) ]

One thing I wanted to mention that was SO COOL, is that Marshfield Clinic is a pioneer in computerized medical records technology, and I can't tell you how cool it was that we were able to view all of her MRIs (frame by frame), XRays, and Ultrasounds right there in the office on her doctor's tablet that opens up into a laptop, too. He could show us frame by frame the mass in her leg, and her hip/buttock.

I don't know how many of you have seen the commercial in the Olympics about the "pen scanner" that looks like the Star Trek doctors' scanners, but we talked for a bit how they are hoping to replace the stethoscope with a hand-held ultrasound device. It's going to be a long time coming though because of politics with radiologists (who understandably don't want to lose their specialty, but I think would still be needed for sure anyway), and figuring out how to train the next generation of doctors to use the technology they are not trained to read the scans will also be a problem. (We had a really nice conversation with her doctor)

He also mentioned to us that her presentation isn't unheard of (subcutaneous mass), but that in all the cases he's personally seen or treated and read about the people all had clear pneumonia and/or skin lesions (or bone infection). So I guess it's "uncommon" although not REALLY rare - at least not around here. Four people besides Amanda were being treated in the Hospital for this while we were there, however all four (2 adults, 2 children) had it in the pneumonia form. One of our pharmacists was familiar with it, but never heard of it as a mass in the soft tissue - only the respiratory form.

Also, it wouldn't be odd if we find out some of the rest of us may have it -- just something we'll have to look for. She really doesn't go anywhere without at least one of her sisters, so we'll just have to watch them for a while. It can take from 3 months to 15(!) months to present itself in the body, and besides last April when we were all sick at once no-one has been sick. One case he had read about was a group of about 10 guys who went camping here in WI from down South where they don't have this fungus, and out of the group who were all tested after 2 got really sick with pneumonia, they discovered 7 or 8 of the guys had it, but several with no symptoms.

So, that's where we are... Taking things slowly, day by day. The doctor says we should mark down on the calendar the day she "can't find it" in her leg anymore (the one in her buttock is really hard to find already, but I think the doctor extracted almost half of it with the needle biopsy, so that one will heal a lot faster. The one in her calf is more of a solid mass, so it will take time to go away.

There is no telling how long until she is symptom-free at least, but at least 4-6 weeks, if not 4-5 months maybe (he hopes faster because it seems to be responding well to the meds already which is a good thing).

So, please continue to pray that Amanda will return to health from this infection - only 3% of patients have bad problems, but that's usually the ones with pneumonia-like infections. Hers is more uncommon, so it's hard to tell what will happen, really. She should be alright though.

Please also pray we will find good doctors as we move from one "medical system" to another. We are needing to find specialists along with regular doctors for everyone, and it would be nice to find good doctors right away that are also close-by at least once a week if not right here in town (most specialists have about 3 area clinics they see patients in - as well as patients at the regional hospitals).

I think we can finally start getting back to a somewhat normal atmosphere around here and relax a bit now which is a very good thing. It's so stressful when your child is sick. Of course, we have some longer more Chronic things to worry about now, but nothing that is life-threatening, so that is good. And, with medical advances and a brand new hospital close-by we are in good hands now I think.

Praise God for Amanda getting better so quickly, and for the doctors, nurses, and all the care she has been receiving! And thanks again to everyone for their prayers, good thoughts, support and love. It means so much to all of us.

Thanks for reading the updates, too. It helps to be able to write it all out and get it straight in my mind as to what's going on as well!

OH! I almost forgot! Samantha (our youngest) is having a problem with her tooth (a bad filling - so we are seeing a new dentist, too! It's the third filling among the girls that's fallen out! Ridiculous, IMHO!). She has an appointment on the 1st, but please pray for her to stay out of pain she is having occasionally right now.

Thanks again, and I pray everyone else is having a good week, too!

God bless you & yours,
LR

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