As we we driving I couldn't help but think of all the doors that God has led us to. When Ellie was first diagnosed we were faced with a choice for her treatment, choose DC that was much closer to home, or Memphis...13.5 hours away, where we know no one. I had no idea how to make that choice, so I continually prayed that God would open whatever doors we needed to walk through. DC took a week to contact us, and St. Jude had called us the next day...door number 1. Being 30 some weeks pregnant, I couldn't travel with Ellie, so Richard had to go, he only had enough vacation time to be paid for 3 weeks, I only had enough sick days to be paid for a week....then door number 2 opens and my coworkers donate enough sick days to be paid for 12 weeks. Then the hearts of so many opened and donated to our family, that being without Richard's paycheck has not been a burden. The biggest door lately, opened so last minute...that I can't believe planner Carly didn't have a heart attack. We were blessed with finding an organization that helps families like ours with housing and many other needs. Richard got in touch with Habitat for Hope on a Thursday, and within just a few days he was moved in to our new "home". We don't have to split our family up anymore while we are all in TN together. Once again...I had a plan in mind of what we were going to do...we were prepared to get a hotel room for the duration of our stay in TN since we could not all stay together in the Target House....and then once again God said "I got this, stop stressing". Our new "home" is so much more like our home in VA. We are surrounded by woods, there's 4wheelers parked outside and a great playground for the kids.
There has been quite an adjustment for us all. We haven't lived together for 6 weeks and we have a new family member! It didn't take Noah and Ellie long to start arguing over toys.
Having my mom here has been great, especially as I attempt to learn the hospital and it's routine. She has been able to take Noah to her hotel so he can enjoy swimming, instead of sitting at the hospital all day....and SG just sleeps through it all! Its pretty overwhelming to walk around with Richard and Ellie and they know where everything is and what to do everywhere. I have met some of the nicest people as well and I'm amazed at how much they know about our family.
As most know Ellie had her MRI on Wednesday to check on her tumor and her spinal fluid. It was a long day, especially since Ellie couldn't eat all morning, and that lead to even more dramatic meltdowns! Richard and I spent the hours waiting for her in the sunshine, just enjoying being a couple again. It's been easier to be Mommy and Daddy again than I expected! Ellie's doctor called us that night to let us know that her MRI showed no evidence of disease in her brain and on her spine....which we were super excited about! But her spinal tap info wasn't back yet, that's the part we really wanted to know about. As we went in the clinic the next day, we got to see the pictures of the non existent tumor in her head...which was very exciting to see, but we still had no spinal fluid results. As we walked down the aisles of the grocery store Richard's phone rang...it was the doctor. She was very excited to report that Ellie's fluid had come back negative for tumor cells. We cried in the middle of the store and forgot everything we had come for! Of course everyone around us was beyond thrilled, as we were too. There 's not much research on Pineoblastoma, but having tumor cells in your spinal fluid puts you on the high risk category for treatment, so not having them would be great! We soon learned that the pathologist took back his original findings, yes there are not as many tumor cells in Ellie's spinal fluid, but they are not completely gone. Hearing that was like your balloon deflating...we were still excited about the results, but it was a bit of a let down. I think I was so worried about everyone who loves Ellie so much, I didn't want them to be discouraged. The doctors were surprised when the results first came back because no ones tumor cells are gone within two months...but they were just as excited as we were and safe to say just as let down when we found out the results were changed. I know that Ellie taking part in this study will help others, but I was so excited at the thought of maybe God was going to use her to unlock a door for others with this same tumor. Maybe that still is his plan, I've stopped trying to figure it out, because I'm finally learning that once I think I have a plan in place, He shows up with a much better plan than I have.
Today we got to open the doors to church, as a family of 5. There is a church here that our church has a connection to in a round about way. They reached out to Richard when he first got here and we were finally able to go today. It was so nice to be there as a family, meet so many people who had been praying for us, and have a moment where the whole church came together to pray for Ellie. The pastor preached on love...so appropriate for our family. About loving your spouse and your children. Being apart for 6 weeks helps you to appreciate everything your spouse is and does (sad that sometimes it takes a crazy situation to make this happen).
The next door I will have to go through is Richard heading home and Ellie and I here alone...which I can't say we are alone any more, I feel like God moved us into this apartment to help me through the next couple of months. We will once again have to split up our family...well at least that's what I think will happen...but God does a really good job of proving me wrong! So I will lean on Richard and I's vow to live in today, to enjoy every moment we have now, to not worry about next month, next week or next year. To love with all we have, and continue to praise God for the work he's doing in us and through us.
Prayers, Praise and Pink