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

[Joya]

CURRENTLY via FReepmail from LibertyRocks 02/11/2010, late Thursday

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”.

= = = BACKGROUND via FReepmail from LibertyRocks 02/07/2010 [Superbowl Sunday]

Dear FRiends,

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.

Please just pray for Jesus to heal my baby!

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.

God Bless all of you, LR

[DollyCali]

PTL for some good news. Now to get that medicine thing worked out. That is criminal to charge that much for medicine .. it surely cannot cost such a high amount to produce.. but what do I know..

keep us posted!

[nina0113]

Thanks be to God.

I never heard of such a thing - it's like an episode of House.

[nina0113]

It’s naturally occuring and the spores are released in the fall. So, if you’re hiking, fishing, swimming, etc... you can come in contact with it. The spores are inhaled and it usually shows up in the lungs, but for some reason it decided to hang around her body for a while and set up shop in a her hip and calf..

You know what..that WAS an episode of House. The dad and son were hunters. The spores were dormant in a cyst and when one of them got in a fistfight, the cyst ruptured and the spores were released and he got really sick. I can't remember which season it was.

[cubreporter]

Continued prayers for Amanda.

[Mrs. Don-o]

Thanks you for the good news aand updates, and thank the Good God above all.

I hope you will get gracious provision made for the pricey meds, and I predict you will. I take some humongously expensive injections for Rheumatoid Arthritis, good insurance but couldn't even afford the co-pays, and the mfgr turned out to have a HUGE DISCOUNT available.

Thank God --- again --- and I'm sure you'll pass the thanks on to all the wonderful doctors and providers!

[wmfights]

Please Lord bring comfort to Mandy's family. We don't know why things happen, but we have FAITH that all is to your greater glory. Please hold Mandy close to you and let the family know you have her firmly in Your grasp. I ask this in Jesus name. Amen.

LR I know it's hard and stressful hang in there. God will see you through this.

[GailA]

Make sure if she needs any thing to counter the anti-fungal meds that the doctors tell you about it.

Doctors faill to tell people when they take antibiotics need to be taken with Probiotics in order to prevent mouth and vaginal yeast infections as antibiotics kill the good with the bad.

Had to take Nistatin powder anti-fungal med for several weeks, tasted like the bottom of a fish tank smelled.

[WVNan]

LR, I’m sorry I did not see your update on the 12th. I’m praising God along with you. What great news that things turned out to be so wonderful. I’m sure that Amanda is not sure that it’s all good, but I know that you think so. God is good.

[LucyJo]

Get Well Soon, Mandy!

Praying for you, darlin'.

[potlatch]

Continued prayers for her comfort and for help in meds, etc. Prayers for all of you.

[LibertyRocks]

I’m so surprised! I thought we had watched every episode, and I remember something like that, but wasn’t sure! We’ll have to rent that. Amanda was talking about us writing up her case (with some added drama) and sending it to the writing team FOR House! ROFL We have also been joking (kind of) that her Infectious Disease is the “House” of Central & Northern Wisconsin! (Which kind of, he is! But he’s SUPER nice - finally got to talk to him in person earlier today...).

Thanks for letting me know about the episode! :) And thanks for your prayers, too! :)

[LibertyRocks]

Thanks Gail! I looked up her medications online since we got the meds the other day from the hospital and they didn’t have info. on the bottles or anything... I saw it can be harsh on the kidneys so we’re keeping her extra well hydrated, and I got her some Cranberry Juices, too. That, and plenty of fiber for taking the pain meds! LOL They told us to make sure she drinks Orange Juice, and 1-2 bananas per day to make up for the potassium the medicine leaches out of the body.

She’s lucky - the nurse warned her the liquid would be pretty nasty, but Amanda said it just tasted like some funky cherry-like flavor. She still has to chase it with something that is strong in flavor though.

Thanks for your prayers, and advice! I really appreciate it!

[LibertyRocks]

Thanks again for everyone's prayers! I can't express how much they mean to all of us - and I know they mean a lot for Matthew's family, too.

UPDATE ON AMANDA - 2/15

Amanda is feeling pretty good today. The edema (water retention) in her lower leg and ankle is lessening a bit, so the mass in her calf doesn't pull as badly, and she can move the muscle now a tiny bit (although she can only "try" once in a while sitting down and she's not allowed to use it at all).

She had another low-grade fever last night, but was feeling better Monday morning after a dose of Ibuprofen, and rest.

I was finally able to talk to her Infectious Disease doctor (we kept missing each other in the hospital). He will be calling our Insurance plan himself - said, "we know the forms and everything, don't worry" about the costs.

Since she is taking the pill form instead of the liquid until we get the insurance and medication worked out, in the meantime the doctor said that depending on what her blood tests show tomorrow (some people have a hard time absorbing the pill form), he may have her come in and get the IV medicine for a few days in the hospital. We can go to St. Clare's here though (this isn't the same hospital we first went to here, but where my husband had his back surgery 2 years ago - at that time it was so new the waiting room still faintly smelled of paint! So it's a state-of-the-art facility...). That hospital is only 15-20 mins. from home, not an hour, too! :)

We are also waiting to get her wheelchair delivered, but the doctor said he would email her hospital case worker and get that fixed for us - hopefully before she has to go in for her blood tests tomorrow as it's icy out and she's not great on her crutches -- especially while on Pain Meds! Poor thing - tipping all over the place! :)

SO, that's the latest from our home. Amanda wanted me to tell everyone thank you so much for the prayers, that it makes her feel special and very loved and cared about for everyone to take the time to pray for her! I am no less grateful to all of you!

God bless you & yours,
LR (Amanda's Mom)

[LibertyRocks]

If either of you have time, please ping everyone to the update at #193? If not I will do so tomorrow morning or afternoon... Thank you so much! :)

[LibertyRocks]

Manda says she appreciates your post! :) She loves the color pink, and said the flowers are really pretty! Also, thanks for your prayers for her. :)

[LibertyRocks]

Thank you! :) We appreciate it a lot.

[Allegra]

So glad to hear the encouraging news about Amanda!

I will continue to keep her in my prayers until all issues are resolved. :)

[LibertyRocks]

No apologies even remotely necessary! I know a Freepmail to one of the prayer lists, crossed with the thread being put up by Joya by a few days, so no worries! I know you, and everyone else were still praying anyway! LOL :) {{{HUGS}}}

Yeah, Manda (as I came to call her) is starting to get a little bored with sitting — even with a small “netbook” (mini-laptop) to talk with her friends and draw with her tablet. Tonight we got her a huge stack of interesting books to look at/read. I’m also going to modify her homeschooling a bit so she can just do worksheets and such for a while — nothing strenuous, but also something to do!

We gathered a bunch of interesting books on England/Great Britain; my old English Lit Book, a book about the Royal Family (going back a few generations, and relatives like Tsar Nicholas), a book of English Fairy/Folk Tales/Mythology by Bullfinch, and a few more! LOL She joked that she was going to be an expert on the History of England and Great Britain by the time she was done reading those books! :) So, you can tell she’s still in good spirits and making the best of things. She loves things to do with England and stuff, so she was excited to get it all together on the shelf right next to her. :)

I’m thanking God continually for our good fortune, especially in light of our cousin’s passing. We did not know the family well, because our family is so large, but Kevin and I know Matthew’s grandparents - I met them once at Kevin’s Mom’s house years ago, and they attended our wedding, so it’s really sad. Plus there is family resemblance so that’s hard on top of them being the same age! There but for the grace of God... Thank you, Jesus!

[LibertyRocks]

Thanks, Allegra!
Much love from me to you, and your loved ones.
[Hey, are you at home, or “over there”? I’ve been meaning to ask what you were up to. Keeping you in my prayers, too. :)]

[Allegra]

I'm home now, but heading back over there before too long. I really do appreciate the prayers.

I love that Amanda is an Anglophile and enjoys reading all of that English Lit.

Another great book for her would be "A Summer Day is Done" by R.T. Stevens. I'm not sure if it's in print anymore, but it should be easy to get at a used bookstore.

It's perfect for her age group. It's a fiction story based on true events leading up to the Russian Revolution and centers on the Romanov family. I loved it when I was a teenager and read it several times.