today, chemotherapy became part of our vocabulary

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.