Officially engrafted!

It's official! After 3 days of progress, today Charlotte has officially engrafted. Basically, this means her stem cell transplant was a success and her bone marrow is recovering and growing, making all the blood cells she needs! We are seeing improvement in her pain as well as her over all demeanor. Honestly, this fast response can be more typical of a patient who receives their own stem cells like Charlotte vs a donor transplant, however after watching her feel so awful just a few days ago we couldn't have anticipated her turning the corner so quickly! Yet she did!

The team will be slowly taking Charlotte off certain medications now, and decreasing her IV nutrition. For now, we need her mucositis to clear up so that she can start taking in food by mouth again. It's been 2 weeks since she's eaten anything. She is sipping water and swallowing some oral meds when needed so perhaps in next day or so our food loving baby girl will want to eat. She has tried some bites but says it hurts her tongue. We have also been told that the chemo damage will change the way food tastes and even feels for quite some time and many kids have difficulty enjoying their favorite foods for a while. I've been told that nutrition and weight can be 2 big challenges for most transplant patients. While going through this transplant, her weight has been steady due to her IV nutrition but this is a temporary solution until she can start to eat again. Charlotte's appetite and her ability to maintain her weight has been remarkable and not typical for most toddlers going trough the type of chemotherapy Charlotte has endured. So perhaps she will again surprise us.

Finally, since she has officially engrafted, she will be allowed to take some short day trips out of this unit! We will start small later today by using a one hour pass to walk around the hospital, outside the unit. Maybe go see our fish friends, go to her favorite typing toy, get a breath of fresh air. As she becomes less dependent on medications from her IV pole, these visits will be longer and eventually we can take her out of duke (within a 5 miles radius and not around crowds). Then we will be ready to discharge to temporary housing near Duke for a couple weeks. I'm not going to lie....these 4 walls start to feel like they are closing in some days and the small hallway walks are becoming mundane. Even though we keep a positive outlook and attitude, and stay busy when she's feeling up to it, I can't wait to walk in the sunshine with my girl! SHE has opened our eyes in so many ways. Breathing in the world, taking in the moments, changing our perspective on life and what's truly important in so many ways. I still feel negativity creep up, exhaustion, impatience, envy, and bitterness at times...especially when I'm so tired (you can imagine how much sleep one gets night after night in the hospital and on this bench we sleep on), but I don't stay there long. Charlotte's light shines so brightly. God is working through her to show us the way. So we just try to keep the shadows at our back and keep facing the sunshine, feeling his love and warmth in this cold, sterile hospital.

Celebration! Daddy came

For lunch and with her fairy wings on, we took a stroll

Charlotte "poofed" the staff turning them into witches or pumpkins. You can also see R2D2 decorated here. Child life helped decorate her pole we named months ago, R2D2.

She made broken look beautiful and strong look invincible. She walked with the Universe on her shoulders and made it look like a pair of wings.

By: Ariana Dancu

She played bingo today and won a Barbie:)

Posing fairy 

After bath burrito baby. Getting a grin after lots of tears.  I think the awful 4 days of around the clock baths have temporarily scarred her from enjoying bathtime. She never really loved sponge baths anyways. With a central line, she is many months away from playing in the bath tub again 

So, I haven't seen a rainbow in so long. I was having a down moment the other night. After Charlotte was asleep, I curled up in a prayer shawl I was given and sat on our window bed bench looking out the hospital room window. I was praying. And then I noticed a huge and powerful lightning show from God. I watched this for quite some time. I wondered if God sent us rainbows when we needed a sigh of hope and encouragement to keep going, letting us know we were going the right way and she would be okay. But lightning symbolized something different that I felt I needed at this time in her treatment. I saw it again the next night on my drive home. A huge display of cloud to cloud lightning. I got home to an empty house because the kids were in VA with family, and I sat on our porch watching this lightning. I felt it was God saying stay strong. Where the rainbows signified hope and encouragement, the Lightning denotes strength and power. We are finding strength when we feel week. And Charlotte's strength and spirit is more powerful a force then we could ever have realized. God is working through her. She continues to show us what's possible.

This is where Brian and I met. So in a way, this is where our family began.  Let's Go Hokies!

Some more rainbows below sent to me from those who are caring for our Charlotte.