We are so close to going home I can taste it, I can already envision the dog hair on my clothes! The closer we get the more I miss Noah, SG and Richard. The closer we get, the more anxious I get. I was typing up some info about our journey for our Give Thanks for St. Jude walk page (Princess Strong Team Page) and I was taken back to March when we had to make that decision to bring Ellie to St. Jude. I was terrified at what that choice was going to do to my family. I was scared for her to be so far from home, in this new place that we knew nothing about. I was scared at what chemo would do to her, and worried about how any of us would make it not seeing each other for such a long amount of time. Now that I look back on that time its seems so long ago!
Its amazing to see how much we've all changed and grown since back then...I think the only one who hasn't changed is monkey...although he/she has gotten a little dirtier! Since March Ellie has lost her hair, lost some weight but gained a million friends. Richard and I haven't lost faith, but we have gained weight...so much for losing all that baby weight! Noah has gained life experience that I pray will one day impact his view of the world and others. And SG just keeps on getting cuter! It's funny to think of the things I was so scared of then and see how simple they are now. That asking questions isn't as terrifying as I once thought it was. God has continually showed me what I'm capable of by placing me in these new situations.
As scared as I once was to come here, I'm just as scared to leave. St. Jude takes you in and wraps you up and keeps you safe. They tell you where to go and when to be there. I get to see her doctors usually two to three times a week, and can ask all the questions I want right then and there. Once we travel home we will still have access to all our doctors at St. Jude and UVA is fantastic, I'm just anxious thinking about all those tomorrows. Will the nurses there know how to access her, will she let them, what if they don't know how, what if she needs blood, what if I get lost in UVA...that's where the "SHUT UP" comes into play. I lay in bed at night running the thousands of scenarios through my head, I try to pray and once again I end up thinking about next week and the week after. I haven't felt like this in a while and its frustrating to not stay in the "here and now". Richard and I said one day at a time, but lately my brain is fast forwarding and breaking the rules! So I'm asking for prayer for me, that my brain will shut up and I will be able to listen to what God is trying to tell me.
If I just listen well enough and open my eyes, He is preparing us to go home. When Ellie first got to St. Jude she had PT twice a week. About a month ago she was dropped down to once a week. Today, she was dismissed from PT, she has exceeded every goal they set for her. Part of me was sad...but once I look back to where she's come from...
...I couldn't be more proud of her and all she's done! God is letting me know she's ready.
She is doing great. Her ANC has been at 0 for longer than before, which makes life a little tricky with a two year old. She's so good about her mask, but we can't really go anywhere or do anything. She has become so good at getting her shots, barely a whimper anymore, even helps get everything ready. Due to her low ANC she hasn't been in the best mood ever. When she's rested and happy, its all good, as she gets tired or is made to eat....watch out! Eating is hit or miss...as she is currently telling me she can't eat because "her wings are wet"...(this tinkerbell thing has gotten a little out of control). She is starting to talk to people again, which warms my heart. I have even heard her tell people her name...which I then have to translate because most people don't understand "e-ye bane".
Ok so maybe we are more ready than I thought...thank goodness for this blog and all of you who read and pray...I do my best thinking and reflecting while typing. Richard is flying back in next Tuesday for Ellie's MRI and lumbar puncture. I cannot wait to see him and I know he cannot wait to get his hands on Ellie! Ellie will start her new chemo meds next Thursday or Friday and then after 5 days we are home free...well for 3 weeks at least until she has to come back for her next round.
Its just another chapter in this journey. God has always been right beside us, every time I feel down, he gives me peace. Even when I find myself yelling "shut up" at me...I feel him calm me down. I have no doubt he will guide us through this next stage. My anxiety doesn't show my trust in Him....time to let it go!
Prayers, Praise and Pink (and a little Pixie Dust)