Bending but not breaking: the Day 1 jump off

We are all settled in to our home away from home in 5200 bone marrow transplant isolation unit here at Duke Childrens. Yesterday, she went to the OR to have her central line put back in and also an NG tube (naso-gastro) put in which the team anticipated she'll need soon after we begin this chemo. Although she is not pleased to have this temporary tube in her nose, she is tolerating it well so far.  She is meeting all our new nursing staff and of course they are falling in love with our Charlotte.

So today we jumped! She began her first of several very high dose and intense chemotherapies. This first one is actually mustard gas and will secret through her skin potentially causing burns that could vary in degrees. To avoid infection and pain from a bad chemical burn, she will need to be bathed around the clock every few hours for 4 days. To bath her involves many steps and is not quick so unfortunatly we will have a pretty tired and cranky Charlotte on our hands in another day or so. This also means linen, dressing, and mesh gown changes as well as some other adaptations. The hardest being separation from her Minnie Mouse lovey wen she'll need a wash too. I brought a back up she never took to and as I wrote this she is snuggling with it while her real Minnie is being washed. I think she's too tired to care lol. We tried to put her real Minnie in a plastic baggie for her to cuddle with and say she's in a sleeping bag but that novelty wore off quickly. She cracks me up.

For now, she's adapting well to everything and has befriended and charmed several staff members. She seems quite comfortable here in these new halls. She spent close to 2 hours today pedaling a tricycle up and down the short L shaped unit, as well as riding in a push car zooming through the unit squealing and shouting "beep beep coming through!" She was so contagious at one point a staff member jumped on an adult trike and chased us around. In true Charlotte form, she's finding the joy and adventure in this time here.

Finally, today I saw my loving husband for about 2 hours on this our 10 year wedding anniversary. We got a 25 minute Starbucks get away downstairs while Charlotte napped under the care of a nurse checking in on her. And then we hung out in our room with our adorable third wheel. It's strange to say, but I truly wouldn't have rather been anywhere else in that moment. I mean of course a beach in the carribean sounds fantastic. But honestly, it was fitting to celebrate our 10 year near Charlotte here where she is. The traditional gift for 10 years is tin because of its durability and pliability, it can be bent but not broken. This is our marriage. This is also our Charlotte. Both can withstand a storm, bending when it needs to but never breaking.

Moments before we loaded Charlotte up to go to the hospital. My world 

Daddy soothing her after OR

Frozen galore

New Elsa and Anna nightgowns for her stay 

Finding fun in the halls

Playing another favorite: paw patrols 

Playroom 

Wanting to dress like the nurses have to around her chemo

Dressed like a nurse and riding a trike...needs to say it's been a busy day! 

My husband Brian and I a couple weeks ago celebrating early