The summer of chemo is coming to a close!! Tomorrow is my LAST chemotherapy treatment, and saying it's a relief is an understatement. It's been a challenge to write through this process for some reason- I have started blogs and left them unfinished. The emotional ups and downs of coping are very real. Cancer affects every single aspect of your life, and redefines how you view so many things...but many of them one hundred percent for the better. Make no mistake. This experience has changed me, and it's not even close to being "over". After chemo, I get a little reprieve and I start radiation on October 6th. Because my cancer was on the left side, the radiation will affect my heart and lungs. For this reason, I am going to have a newer type of radiation which is cardiac sparing. They are finding that as more and more women become long term survivors of this disease, they remain cancer free, but suffer from heart failure, and effects of scar tissue on valves and lung tissue. We are really blessed to have this available to us. It unfortunately means Monday through Friday trips to main campus every day for 6 weeks, but the inconvenience is worth it to try and prevent as many long term side effects as possible. I will also continue to have the targeted therapy trial drug infused every three weeks for a year, but at least the really hard stuff will be behind us by Thanksgiving:)
Incidentally, September is Hydrocephalus Awareness month, and I figure we are way overdue for a Meghan update! We have enjoyed a great summer with her. We have done NORMAL. We have done playtime, and splash pads, and playgrounds, and thanks to some new equipment that was loaned to us, Meg has gotten to have some great experiences. She has continued to have all her therapies, and specialist follow ups, and until last week, things were mostly status quo. Meg has X Rays taken of her spine every 6 months to assess both the curve in her upper back, and the instability in the bones of her cervical spine (neck). We knew she would definitely need surgery at some point, and have been communicating with a neurosurgeon in Utah that specializes in her type of condition (for anyone who is new to Meg's story you can read about Klippel Feil Syndrome HERE). I got a call from her surgeon on Friday who said that he thinks her most recent films show that her instability is getting worse. She was already scheduled for an MRI of her brain and spine next week, so were are trying to get additional images added on as a starting point. If the MRI shows the same instability, we will get a CT scan to look at her bones to assess their maturity. If they are ready for hardware, we may be traveling to Utah sooner than we thought. In the meantime, I am alternately afraid for her to fall since she is becoming so much more mobile (she is cruising like crazy!), but still cannot stand on her own. Falling for her could be devastating if she fell in such a way that her neck moved enough to damage the spinal cord, so we continue to pray that she will be protected from injury until we are able to get her to surgery. While she is sedated for her MRI, she is also going to have some minor ENT surgery, a g tube change, and an ultrasound of her kidneys and bladder. She may have had more nerve damage than we thought originally from the tethered cord, so the ultrasound will help us determine that (and we get to add another specialist to her list...). Nothing like making the most out of a day of sedation!
So, we continue marching ahead. We have been blessed with some incredible people helping us through this season of our lives, and God has shown Himself faithful to our family over, and over, and over. Lavishing love, infusing with strength, and enabling a type of bravery I could have never known first hand without this specific experience. Anytime I feel like I am struggling, I look to this perfect little gift He gave me to remind me of what it looks like to be brave. To me, it looks a lot like Joy. The kind that can only come from Him.
A little peek at the rest of our summer! During my good weeks, we made the most of LIFE!!
|Testing the waters...|
|Playing at the Inclusive Playground- awesome!|
|First Pony Ride:)|
|And this happened. I still cannot believe it!!|
|And yeah, we met Mandisa! So cool!|