Healing at home and gearing up for surgery

I've said this before and it has never been more true then right now, but it is easy to get lulled into some false sense of security/normalcy when things are going smoothly. Today was an important wake-up-snap-out-of-it check. A reminder that there is a deadly beast living inside of our baby girl. And the time is near for the surgery to remove it.

Charlotte completed round 5 of chemo today. Aside from slight nausea and some fatigue, she is doing great. We are bringing her home for recovery this afternoon! It is important for her body to heal and for all of her cell counts to be up to healthy levels before the abdominal tumor resection surgery takes place. Today was a step in the direction to plan for this surgery. Brian and I met with our Duke Pediatric surgeon this morning. She has performed all of Charlotte's operations so far. And when she left the room, we could actually both smile at each other and let out a big breath (of relief)! Our job, at this time, has felt overwhelming. We are Charlotte's advocate. But neither of us felt necessarily "qualified" to shop around for a surgeon to do this...but we have done some research and felt it was our due diligence to be prepared to find the best surgeon possible. We would go anywhere. In the past, our own team of doctors have referred families on to other surgeons elsewhere who they felt would be best suited to perform various surgeries. However, we can now breathe a sigh of relief because Brian and I are in agreement with the Duke team here. This surgery has become well within the scope of possibility and our surgeon, Dr.Tracey, is the one to do this. Charlotte will have a scan next week to help create a more up to date "road map" for the surgical team to use as a guide to help plan for this surgery. There are great risks of course, but her remarkable response so far has created a safer environment for this surgery. And after this round has been completed, it can only get better. So, we have made the decision that has weighed so heavily on us. And Dr. Tracey today has easily made that possible for us. We trust her and her medical team completely with our little girl. Please add her and her staff to your prayers as the surgery approaches on July 14.

We are relieved to have this plan in place and so greatful to be where we are. But as the days approach toward July 14, I will be completely honest, Brian and I have never been more scared of anything in our lives. Trusting...it is a tricky thing isn't it? Easier said then done. Trusting in our doctors, in ourselves, in God. We ask him to forgive our doubting because we are only human and we are scared. How does one hand their little girl, cradled in our arms, over?  How do we sit near with our hands off the wheel and allow someone else to drive down this dangerous road with our most precious cargo. God please give us strength to do this. To believe and to have faith. We need it now more then ever. We have and ARE truly witnessing something special as we watch Charlotte fight this cancer. Many people have made remarks about how strong we are being. And I read somewhere that "you never know how strong you are until being strong is the only choice you have." That is our reality. But this time, this surgery, we are going to need to pull strength and faith from all of you. As I type this with shaking hands, we thank you for it. And God for helping to provide it.

Some of you have never played with or met our little Charlotte. Of course many of you have and so this is just something to give you a smile. I included a couple videos below from this hospital stay that kind of capture aspects of her spirit. (And some pictures during this round too as we continue to document and make memories). She is something. And she is a force. I kept telling myself this as I literally chased behind her while wheeling her IV pole as she ran around outside one day. I thought to myself "is this normal?!? This kid is on her 3rd day of chemo in her 5th round and she is happily chattering to herself running outside! I see no other children anywhere in sight. How is she doing this?! This isn't normal!" Then I realized. Of course it's not! And neither is she. She is remarkable and I get a front row seat to her remarkable journey. I am watching something truly special. We all are.

Playing store part 2

Playing store part 1

Ice cream break with daddy

Daddy starts round 5!

A favorite past time we visit. This little computer in the waiting area. "Typing!" She says 

A little playground area open sometimes

Playing while we wheel her "R2D2 ( IV cart)around. 

Playing at the nurses station

Met a sibling of a patient in the playroom who also likes trains 

Cuddled in bed reading 

A Father's day picture: after visiting at the hospital all together, Brian went with Taylor,Parker and his mom to see Finding Dory 

Loving her new hospital socks

Taylor wrote this message on her door❤️