We are 4 hours into our 8-9 hour adventure home. It's been a wonderful vacation and we witnessed some amazing things out of Lucy. It's hard to believe that there's a possibility cancer has returned to her body. She's been strong this week; stronger than she's been since diagnosis. Not only is her body stronger, but her brain is sharper too. I think even today shes stronger than yesterday.
We have wrestled with our emotions and hearts over the decision to go through with surgery on Monday. Since June 3rd, we've been to hell and back on an emotional roller coaster. We have been told on three different occasions that cancer has retuned. The problem is, this is Lucy. Nothing is ever easy with this girl. So, for the three times we've been told she has relapsed, someone has had to come back and tell us that there is reason to doubt.
No one is to blame for this. The problem is that Lucy has had so much trauma in her brain over the past 18 months that there is never a clear picture when examining her MRIs. Between two bouts of meningitis, resection surgery, over shunting, and the thiamine deficiency...Geez! No wonder the radiologists cant agree.
After much prayer and some rather sleepless nights, Erik and I have agreed to go forward with an open biopsy on Monday morning. Dr. B will perform the surgery, and there is not a man in medicine I trust more. He has always believed in Lucy and her ability to fight. We have to trust that this time is no different. Without a firm yes or no on relapse we can hardly move forward with our lives. We were given the option to just watch the area with scans, but hoping to roll a 7 with my daughters life is not a gamble I'm willing to take.
I dread having the conversation with my children tonight about what's to come. Once again their lives are being turned upside down. Once again Ella and Jack will be away from me and Erik for an unknown period of time.
And the other issue weighing heavily on us is having to start in a deficit trying to play catch up with PT and OT. This week was amazing and it's hard to know that we are going make a choice to knock her back down. But honestly, we don't have a choice do we?
We are making this decision knowing that God will bring us through. All of us, especially Lucy, just as He always has. We aren't in control of our lives. We've come to know that all too well.
And just for some light comic relief after such a heavy post...as we are traveling home we just had to pull the truck over on the interstate to clean up a huge vomit mess! Apparently Jack gets car sick and we are just learning this. Luckily we were in a traffic jam outside of Montgomery and everyone and their mother got to see the spectacle. It was awesome!
Just because you have one really sick child doesn't mean you are immune to the craziness of life. We are learning more everyday how to roll with the punches. I think that saying "what doesn't kill you makes you stronger" is becoming our family motto!
15 hours ago