Wednesday, February 17, 2010

update on Ashlyn + TSM kitclub sneaks

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it's been a while since i updated on ashlyn's morphea and her treatment. and now that we're just days away from starting chemo, i suppose it's time. if you don't know what i'm talking about, you can read this previous post.

she's really doing just fine with small complaints, on occassion, about it hurting or feeling tight. she doesn't really know the seriousness of her condition and that's just fine with me. she's a worrywart, with high anxiety (and sensory integration issues), so i'm careful to not dwell on it. it's not a normal part of our daily conversation at this point.

all that to say she knows enough to know that she needs treatment to stop it from spreading. treatment being chemotherapy & steriod ointment. but, she's young enough that she doesn't associate the word chemo with cancer. we currently just apply steriod cream, but haven't seen any change at all. she knows more in depth treatment is coming.

in december we visited her doctor once again, and learned:
  • the skin that is affected now will NEVER return to normal. the only thing we can do is be agressive in attacking it to keep it from spreading and keep the current affected area from thickening any further.
  • the chemo will keep it from spreading, the steriod ointment is applied to help soften the afftected skin. the worst of it looks like scarring on a burn victim.
  • they can't tell me when/if it will "burns-out" on it's own without treatment. it's different for every person affected. her's is still very active and spreading. a year ago we saw it rapidly spread in a matter of a week--doubling in size.
  • treatment right now is a definite 6 months to 1 year.
  • the chemo she'll take is methotrexate, by mouth, in a split dose--only one day a week. so like a friday night/saturday morning combo. SO thankful we don't have to do inpatient chemo.
  • she'll have to take another medication daily to counteract the side effects of the chemo.
  • we were reminded again of weekly blood work to watch her liver function & red blood cell count closely while on the medication.
  • BUT, then the blow came when we were told we couldn't start treatment without getting everyone the H1N1.
  • for the girls, that meant, getting one dose...waiting 30 days...getting another dose...waiting another 30 days. OY! 60 more days without treatment and watching it spread. eeeks!
  • the doctor has also been honest about the fact that this is such a rare condition, that they don't really know much about how it behaves (there is no pattern), and if the benefits from treatment outweigh the risks.
  • it's really case by case. with ashlyn, her's is over a joint and will continue to thicken and make that joint immobile as the skin thickens and tightens. if no treatment is done, she'll eventually need plastic surgery to clip the scarring to help mobility.
  • if it were not over a joint, i think we'd forego the agressive treatment.
since the visit in december, ashlyn has come to me, telling me she found another spot where the morphea is starting. it isn't connected to the spreading of the main area, it's a whole new location about the size of two quarters side by side. it's in the deeper layers of skin, meaning we can feel it, but can't yet see it on the surface.

at this point, we know without treatment it will only worsen. we're thanking God that it is at least in a conspicuous location that most people never see and it isn't all over her face or arms where she'll be questioned about it constantly.

anywho. this friday, will mark the 30 days post her second dose of H1N1. treatment will start within the next week.

keep us in your prayers as we start treatment. a child with sensory issues mixed with all this medical poking & proding doesn't always make for the most pleasant of situations.

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and on a lighter note............The Story Matters March Kit is now being peeked over on the blog! i had the chance to play with this kit and let me tell you, you're gonna LOOOOOOOVE it!

i'm smitten with the handmade clay buttons that came in the kit. seriously, beautiful.

here's my peeks and you can see a slideshow of the kit contents and the other teammembers peeks over on the blog.

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go get yourself a kit! you wont' be disappointed!
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10 comments:

  1. Tania, I feel for you and Ashlynn . . . I know all too well what you and your family is going through. Keeping you all in my thoughts and prayers.

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  2. I don't know what to say about the chemo and all that stuff, prayers and good vibes I will send your way.

    The sneaks are cute and I look forward to the full reveal.

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  3. Hi there. I just came across your blog from the SRM stickers blog and your post about your daughter's condition had me instantly interested. I felt like I had to write to you.

    My daugher is 7 years old. At 4 years old, she was diagnosed with Leukemia. Once we received the results, she began chemo the next day and was to continue for 2 1/2 years. Her last dose of intravenous chemo was actually yesterday. She is 1 month away from being completely done with it. I know quite a bit about Methotrexate, as this is one of the medications that she has been taking since day 1. I realize that your daughter has a different condition, but I felt that I should tell you my experience with it. It is usually 6 pills that they take on Fridays. For Chloe (my daughter), she has also had it injected into her spine every 3 months. I don't think this would be the case for your daughter since she does not have cancer cells that could be hiding in her brain...Anyway, I have not seen many side effects with the methotrexate, except a few things. 1) A reduction in her ANC. When it was consistently low, they reduced her dosage to 3 pills every Friday and her ANC has been consistently "normal" for her condition ever since. I read something about a possible reduction in your daugher's red blood cell count...this will be fairly easy for you to detect. She will be tired and will appear really pale. If you are getting weekly blood tests, you will be on top of that though. If it is dangerously low, they will just give her a blood transfusion, which is not that big of a deal. You'll want to do your best to keep her away from sick children. (2) Another side effect would be extreme sensitivity to the sun. Watch for that! I don't think that methotrexate would cause extreme hair loss for her. Most kids lose their hair from more extreme chemo, such as Ara-C and prolonged use of steroids.

    I hope this helps put your mind at ease. Please feel free to email me, ok? Take care and big hugs to your little sweetie!
    Michelle Quinn
    michelle@amillionmemories.com

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  4. oh, tania.
    i read your post from september & i feel for you & your baby girl.
    though i must say you're doing an AMAZING job of staying positive and focusing on all that is awesome and cheerful in your life. :)
    stay strong, girl.

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  5. Keeping Ashlynn, you & your family in my prayers. I know she will always look to you for strength & you're doing the best thing you can by staying positive about it all & not dwelling on it. It will keep her positive, too.

    Your sneaks are so cute. I adore your work!

    Many big hugs for you, Tania... :-)

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  6. Thinking of you Tania. You seem like a very strong woman and mother. I hope everything moves along well. (((hugs)))

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  7. {{{hugs}}} Tania. I will keep Ashlynn and your family in my prayers. Although I don't know the stress of having to go through chemo with a youngster, I do know what having a sick child is like (my Ashlyn has been sick for years). Keep your chin up!

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  8. Ohhh Sweetie.... I will surely keep ur family & DD in my prayers ! Ur work of course is SUPER AMAZING as always ! You are an amazing individual that will do amazing things in the life of ur family ! (((HUGS)))

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  9. I am so sorry to hear about your daughter but glad you finally found someone to answer your questions and get you the right treatment! I will keep you all in my prayers!

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  10. Thinking of you as you face this challenge, Tania. We'll keep you and Ashlynn in our thoughts and 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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