Wow! Labour Day! I can hardly believe it's almost fall! Although Friday and Saturday were quite hot, labor day (excuse the inconsitent spelling of that...I'm American and i just don't understand the "u"...but i try!) weekend reminds me that fall is not far off. Cooler weather and less mosquito's!
I have a surprise for most of you! It's been so long since i sent an update, guess what?!?! RYAN IS HOME! Not home for a visit, BUT ACTUALLY HOME WITH WORK HERE IN WINDSOR! Thank you Lord! It's about a month long project, but hopefully it will turn into more. And actually being here will make it a bit easier to hit up some people personally for work. He got home last Wednesday and starts work Tuesday. It will be so strange to have him home for dinner and bedtime every night! We are so very thankful for all of your prayers.
I was just sitting here reading a devotion about "looking for God." How many things go by that go unnoticed because we just keep pushing ahead...wanting to get to what's next instead of what is now. It made me think about Ayla...of course.
Just tonight we were going through some of her old clothes to pass on to another little girl. She was helping. She pulled out these little brown suede boots someone had given to us when Ayla was tiny, at the time they were much too big for her so we put them away for another time. I had sometimes thought about the boots and how i coudln't wait for her to be able to wear them! But today when she pulled them out, i felt sad. She never did wear those cute little boots...when they fit her...she couldn't walk...she was far to sick to even stand...
Funny how those little things can set us back into heartache that seems so fresh.
That said, how many things do i over look in a given day just because life happens? Ayla running in the backyard, kicking a soccer ball, swimming, jumping, riding a trike, all these things that we kept waiting for to happen sometimes get overlooked or don't seem as "miracle worthy" as we once felt like they were.
So as i sit looking at those silly boots, I am thankful for the many miracles God has done in Ayla's life...our family's life.
We have decided that we are going to try the trial medication with Ayla. We have prayed a lot and talked to her old doctor and her whole team at the John McGivney Center here in Windsor and we are going to try it. There are some risks involved, some big, some small. But if anything bad happens, we will stop right away. Her medication will be by infusion at the hospital 3 times in the first 6 weeks and then 1 time every 4 weeks after that. The IV will likely run 2-3 hours. She will have to have a chest xray and a TB test before she can have the drug, she's scheduled to get those on the 14th. So she will begin shortly after that.
Part of the reason we decided to do this was because, the doctors really think this is the only shot Ayla has at being "normal". This is really all they have left. And when i ask, "well how far away from normal is she?" It's evident to them, that her skin, thought developmentally she's doing well, will never get less tight/stiff/thick without more help. And if we leave her like this for longer, it's less likely that any medication will ever work. Also, because of the way that her skin is, if we leave it, it could possibly inhibit growth of her limbs (limbs being significantly longer/shorter than others), muscles, and cause constant contractures of her joints.
So while now everything seems so "normal"...we have to think long term.
Someone said to me, "Well, think about when she's a teenager. Would she be more likely to say, "Why did you make me do those IV's? They hurt me!" or "If there was a chance a medicine would have made me better, why did you do it?" TRY THINKING ABOUT THAT QUESTION!
Anyway, I've been in contact with her social worker and she's going to be in touch with the child life people at the hospital and try and set it up so that she has something to look forward to while she's there. A special craft or a new movie, something of that nature. The social worker will also work with Ayla and I doing play therapy so we can see how it's effecting Ayla social-emotionally, which is really what i'm concerned about the most.
Maybe this is the next miracle God has for Ayla...maybe not. I'm sure we will learn something and grow somehow...no matter what, as long as we trust Him and if we continue to stop and look at the "small miracles" He does every single day.
Lots of love and God Bless!
I hope you all had a great labour/labor day weekend!
Lacy
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I was looking at pictures from our walk at Hillman Marsh from just a couple of years ago - that was a hot day!
ReplyDeleteI'm so thrilled for you that Ryan is able to be home again!!
Kim
xo
I know I'm chiming in a little late but as a person who has been chronically ill my entire life thus far, I think doing the experimental treatment is a great idea. Yes it is a lot to go through but you got to look at the bigger picture. I had cancer when I was only three years old, it was stage four and had spread throughout my body. Doctors only gave me a ten percent chance of survival as my cancer was rare at the time and they didn't exactly know how to treat it, so technically speaking my treatment was also experimental. I'm also the hospital's first successful case to have used my own bone marrow in a bone marrow transplant. Luckily I was young, I don't remember the experience but my parents do and they've made sure to remind me what I've been through because although I do still have medical problems, I am grateful they fought for my life instead of giving up hope and letting me die. I can happily say that I've been in remission for a little over twenty years, I am twenty-eight now. I have met the love of my life, we have two wonderful dogs whom are like children to me since I cannot have any, and we've embarked on the path of creating our own business which has been an adventure in itself. Sure, I have missed out in some places, I never did regain a completely "normal" life (I don't believe in the word "normal" anyway because what my life has been so far is "normal" to me) after my cancer because I was chronically ill but everything I have, including just being alive, makes up for it. I did have to deal with kidney failure, developmental issues both physical and mental, diabetes, etc. I won't list every single detail, you get the idea, but I don't resent my parents choice to treat my cancer either. I may have questioned it time to time when I was younger but I always looked at the bigger picture; I'm still here and I still get to experience all the joys of life, even the bad stuff because that's part of the package. You can't have your cake and eat it too. And I also like to look at this way; since treating me those doctors have gained a better knowledge of how to treat the cancer I had, which has given them the opportunity to make that treatment better, so I like to think I paved the way for other kids. Anyway, I've probably written a novel of a response by now. My best to all of you!
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