Wednesday, September 23, 2009

today, chemotherapy became part of our vocabulary

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forgive me while i take a moment to purge my mind. it's the only way i know to decompress and process the words from the doctor today.

last summer we mentioned again to ashlyn's pediatrician that her leg was bothering her. we had noticed an irregular looking area of skin on her upper left thigh around age 3--she's 7 1/2 now. we were just told to watch it and report any changes. finally, last summer the pediatrician didn't like how it was looking (or got tired of me mentioning it) and sent us to a dermatologist.

we went in september and it was determined that she needed a biopsy---it was scheduled for 2 months out. within the next week, it started to spread--doubled in size--so the decision was made to do the biopsy immediately.

the biopsy procedure was torture (ashlyn has sensory integration issues) but the wait for answers....almost 3 weeks later.....was worse. then we celebrated after we were told it was benign granuloma annularae.

but, we weren't given a treatment option. just watch it and report changes.

then it started spreading some more and at her last checkup to her pediatrician she wasn't feeling too confident in the change, so we agreed that a referral for a second opinion to a pediatric skin cancer doctor was best. that was 3 months ago.

today was the appointment. this doctor already had pathology reports, doctor notes, and pediatrician notes. she had done her homework. within minutes of introducing herself, examining ashlyn, and measuring the location, she was quite confident that we are not dealing with granuloma annularae, but instead the more serious condition we were warned about by the first dermatologist called MORPHEA.

to describe the area....the thickened area covers approximately 7" long by 3" wide and starts at the upper thigh and stretches upward over her hip bone and above her hip. it looks like how scar tissue on a burn victim would look, except with a layer of skin stretched over it. it feels like a thick rubber band pulled taut. the area that it's spreading to is not thickened yet and it covers about 8" x 6" across her belly and flank. it looks like dimpling or cellulite under the skin. it is all slightly pigmented. it runs into the deepest skin layers and fat tissue.

here is what i know from today's appointment:

it is a rare condition affecting 25 out of every 1 million people. half of them are pediatric patients and mostly females.

it is an autoimmune disorder and similar in nature to scleroderma, except it does NOT attach to internal organs like scleroderma---which is a good thing. it is in the same family as lupus and rheumatoid arthritis.

it is chronic and recurring, thought to be cause by trauma or illness (strep, flu, or even vaccines). it is not fatal, but there is no cure.

it can stay the same for a few years then all the sudden rapidly spread, again, usually triggered by illness.

the biggest concern is loss of mobility because it is over a joint. if we do not treat it, she could very well lose mobility of her leg because as the skin thickens it also tightens up and makes the joint stiff.

right now she is very active and can do everything except sit with her legs criss cross for more than a few minutes.

treatment is aimed at softening and reducing the spread of the area that is thickening.

treatment suggested to us was methotrexate (chemotherapy). i was there alone with her and as you could imagine was not prepared to make that decision, so in the meantime we were given a topical steriod to put on it twice a day. with the amount of thickening she has, they don't expect any change with the steriod cream. but doing something is better than nothing on the area that isn't thick yet.

possible side effects of this chemo drug that i was warned about are:
hair loss
ulcers of the mouth and throat
nausea
feeling flu-like
liver damage
red blood cells not replenished appropriately
renal issues
supressed immune system and getting sick very easily

when on the drug she'll need to be monitored very closely with weekly bloodwork. she will also be able to continue school with no problems.

things i forgot to ask:
is the drug oral or injectable?
daily or weekly?
is treatment given at home or hospital?
how long will she be on it?
how long does it take for a noticable response?
what's the success rate?

basically i need to know is it worth robbing peter to pay paul? do the benefits outweight the risks? i pretty much went blank went i heard her say chemotherapy. i need to pull myself together and make a call tomorrow to get these things answered before we can decide when to start treatment.

looks like i better get my act together and make some more cards for that etsy shop.........our medical expenses are going to go through the roof.

24 comments:

  1. Oh, Tania! How scary!! Giant hugs to you and your sweet girl! Hope you get all the answers you're looking for. Let me know if there's anything I can do...really, okay?

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  2. I am so sorry to hear this. You all are in my prayers.
    For what it's worth- my sister and aunt (psoriasis and RA) have both been on methotrexate. My sister had some elevate liver enzymes while on it,but other than that they both tolerated it very well.

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  3. Oh my, how scary for you and your family. But I'm so glad for you that it wasn't any worse. I'm sure as a mom you don't want to have to make this kind of choice but no doubt you'll do the right thing for her and the family. Best of luck to all of you. {{hugs}}

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  4. Oh wow, huge ((((((((hugs))))))))) to you, Tania!!!! If you need ANYTHING, you know where to find me! xoxo

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  5. i am so sorry to hear this tania. what a nightmare! please make sure that your doctor advises you on diet as well as all the other issues. auto-immune diseases can be helped by eating the proper foods. and it is nice as a mom to be able to do something for our kids that doesn't require needles. :(

    prayers to you all my friend

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  6. I can't even begin to imagine all of the thoughts and fears you are having right now. But always remember that nothing is impossible with God. He is the great miracle worker. Just keep leaning on Him and know that He is always there and in control. Praying for peace, healing and answers. (((hugs)))

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  7. Keeping Ashlyn and your family in my thoughts an prayers.

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  8. God will help and guide you through this hard time. Plenty {{{{hugs}}}} and prayers for you and Ashlyn and the rest of your family and Dr.
    My gf is going through chemo...she stopped eating all process food and went with home grown food, no ground beef..buffalo meat. Her Dr said it had stop her tumor's growth and her side effect was only nausea and that had only been slight.
    Don't forget to blog to vent, we are here for you.

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  9. huge hugs!!!! this is so scary - what a long road...hang in there, we are all pulling for tania!

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  10. Prayers going out for Ashlyn and your family, Tania. I'm so sorry for you.

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  11. Hugs and prayers to you and your family, Tania.

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  12. Hugs, Tania!
    I'm praying for you as you decide what is best for your daughter! I pray you get all of the answers you need and that it works wonderfully with no bad side effects. BIG hugs to you and Ashlyn and please let me know if there is anything I can do! More hugs and prayers!!!

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  13. How scary - I'm so sorry to hear this ... sending p&pt your way.

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  14. I'm so sorry, Tania! I can't even fathom how difficult this must be for you and your family. Know that you'll be in my thoughts. ((hugs))

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  15. tania,

    i am so sorry. i will pray right now -- that you will know what to do, that your sweet little ashlyn will be healed, that the doctor bills would not be burdensome, and that somehow through all of this you will feel supported by those around you and feel a measure of peace no one would think possible.

    sara

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  16. Oh Tania - I haven't stopped thinking about you since you posted yesterday. Hugs and prayers - and wishing you clarity and wisdom to make your choices. They are not easy.

    Here I was at the doctor's office this morning struggling over vaccine choices - and I even moaned out loud to the doctor that, dang it, being a mother is no cakewalk!

    But like I told the doctor - whatever choice I do make, I will stand by it and that will be that - that's the path we will follow and we won't look back. Because we can't - we can only go forward with the knowledge that we are doing the best we can possibly do with the knowledge we are given. So much is out of our control.

    Hugs friend!!!

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  17. Your family will be in my prayers. I'm sure you will find the best treatment for your little girl.

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  18. Tania,

    Sending hugs and praying for your daughter and your family. Good luck--you have lots of online friends who care!

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  19. My thoughts are with you and your family during this tough road!

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  20. Oh, I'm so sorry... will be keeping you all in my thoughts and prayers, Tania!

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  21. oh, Tania. I'm so sorry to hear this news. I know we don't even know each other, but I just had to post and say that I'm thinking of you and your family. It's so tough when our little ones have to go through health problems like this.

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  22. Tania - praying over here too!!! Praying for wisdom for you guys to make the right decisions and for the doctors as well - and for peace and comfort for all of you no matter what happens.

    I'll repeat what a couple others have said - all the research I have done which include skin conditions, auto-immune disorders, and sensory issues - all are helped with diet changes. Something else to analyze and think about, as if you aren't already. :) ;)

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  23. How very scary for you. I am sure that with your love and support she and you will get through this. So many questions, which I am sure will not all be answered. Good luck you and your family are in my prayers.

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thank you for taking time to leave me a comment! i will do my best to leave comments answering any questions you may ask :)

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