Experimental Medication 8-17-11

So it's starting to cool off a bit here now, at least at night...we will see how long that lasts. Our neighbors pool was a bit chilly yesterday at 80 degrees, instead of the near 90 it was most of the summer. I gotta tell you, those few degrees make a big difference!
We were very blessed to have Ryan home for a visit on the 5th-12th of this month. I spend the first couple days he was home away...I got to go to Nashville with a few of the women from a MOPS (mother of preschoolers) group from our church. We had an awesome time and it was much needed for many of us that went. I came back feeling like a person again, not just a run ragged mom:)
Ryan's visit was very good. The kids enjoyed their couple days with just dad. We packed in a dinner out, a day of boating and tubing with Ryan's parents, and a campout in the backyard (smores and all). While Ryan was home he also went for a meeting/interview with a company from Sarnia. We still haven't heard back from a few of the other things we have been waiting for. We are trying to wait patiently and pray like crazy. With the one from Sarnia, they said that we should hear by the end of this week. So thanks for your continued prayers for Ryan to find work closer to home soon. They are very much appreciated.
As far as things with Ayla...they are going well. She's had some cramping in her hands the last few days. They seem to sieze right up, so her therapy people will check it out tomorrow. She's having lots of fun this summer in splash pads, pools, playgrounds, and watching Ezra play soccer. She will be old enough to play next year...and she found that out and now is very much excited about playing next year. Please pray for me to not have a heart attack the first time i see her on the field with 20 other kids running at her...okay? *grin*
I heard last week from the pharmacudical company about the experimental drug they want to try Ayla on. The govt won't approve the medicaion b/c her MRI doesn't show her disease now that the inflammation is gone and short of a skin and muscle biopsy, they won't. But the company said they would give Ayla a "compassion dose", which means that for 6 months, Ayla could use the medication free of charge. After that they would apply through Trillium for her to get it, but the govt will not pay for it. It is $1100 per dose and she would recieve one dose per month, if we decide to try it and then it actually works after the 6 months trial. That said, we have time to decide whether or not we want to do it or not. It is given by infusion (IV), so she would be at the hospital for a few hours for each dose to run. Which in my head, when we found out it was infusion, we wanted to immediately say, "no way!" The things is...what if it made her all better? What if it cured her? Would it be worth the trauma? But what if it does nothing? It certainly wouldn't be worth the trauma...but there is no way for anyone to know if this medication will work or not, without trying.
So...do we try it?
I spoke her her Rhuematologist today and she was understanding but also said that Ayla's skin is very far from normal. And because of it's stiffness/tightness/"dried play doughyness" it can cause joint stiffness, degeneration, and things of that nature. So she obviously feels it would be very worth it to try. They have used this drug on children before with scleraderma and it's done well. That said, in those cases children are on it for year, not 6 months. So who's to say we would even see a difference in 6 months?
There are a few "minor" side effects such as brain swelling (white matter), a possibly increase in malignancy (they aren't absolutely sure, in fact, they think it's more relation to rheumatic disease itself, not the meds), as well as swelling/discharge from eyes, among other things i can't remember b/c of all the information swirling in my head.
Long story short (haha, I know right??) I am going to have a consult with her old Rhuematologist out of Sick Kids. She's the one that originally wanted Ayla on this med, but she's the one that has seen Ayla since the beginning...
Her PT's and OT's aren't sure the meds would help...they wanted to see if there was a way they could take 6 months (off the med) and measure mathematically the rate of improvment in her skin, flexibility, strength, etc and then see if she has plataued or if she is still improving.
Anyways, it's a very tough position to be in. A hard choice to make. We are praying and praying God will lead us to the right choice, but all the what if's keep building up and make it harder to be sure.
I'm very scared of how the increase time and procedures in the hospital once again will effect her emotionally, behaviourly, phsychologically...She's come so far in all those area's also, is it worth it for a "maybe?"
Lots of love to you all. Enjoy your last few weeks of summer! I will let you know what happens.
Thanks again for your love and support through these last couple years (yep it's been almost that long since 'Ayla got sick'...those 3 words ring in my head often).
Be blessed!

Lacy

Something from a devotion this morning i wanted to share with you all:

"I needed to ask one question in order to move on: “Is God enough?”
When a friend betrays me, is God enough?
When I need to forgive what seems unforgivable, is God enough?
When my child has issues out of my control, is God enough?
When my marriage is on the brink of destruction, is God enough?
When I am not forgiven by another, is God enough?
When my mom is dying of cancer, is God enough?
When others don’t recognize my value, is God enough?
When I struggle professionally, is God enough?
When someone I love uses words to hurt me, is God enough?
When I am in debt and don’t know how I’ll pay my bills, is God enough?
When my past haunts me, is God enough?
When my health declines, is God enough?
When I am let down and disappointed in my life, is God enough?
I discovered the answer I always came to when I asked “Is God enough?” Yes He is."
http://devotions.proverbs31.org/2011/08/is-god-enough-2.html