Feeling the warmth of the light

  We thought we could see the light at the end of this tunnel before this last set back. But the light started getting further and further away from us as we embarked down an uncertain path to heal Charlotte's lungs. Chemo damaged them. We still don't know long term outcome for this. But she responded to treatment. The light became in focus again. And yesterday, it started to appear closer again as we began to discuss preparing for discharge. And since Charlotte has been weaned off her continuous PCA (morphine), and is requiring less IV medication as they have either been discontinued or moved to oral, she can have a pass every day to leave the unit! You should have seen her strut herself hand in hand with her daddy out of the unit yesterday. She was so happy to see the outside world again, even though it was still the hospital world. She has been here for 45 days now. And in isolation for almost 6 weeks only recently able to talk a walk or ride a toy in the hallway even. This step is monumental for our baby girl.

Uncertain news: there is another question mark over Charlotte that has become a "minor" concern and something we are praying about. We desperately want this something to be a nothing. We don't want the light to get farther away now that it is so close. There is an unexpected drop in an important protein made by your liver that is a necessary clotting factor (fibrinogen). Team cannot explain its trending decline. This is unusual at this point in recovery, and they even had to give her a supplement dose via IV to help supply it. In addition, Charlotte has another irregularity that could hint at another issue: adrenal insufficiency (she only has 1 Adrenal gland after surgery and the body's stress response is controlled by this organ. With the stress her body is under, this could be just a temporary condition. Medication can help support her lone Adrenal gland which secrets necessary chemicals for regulating heart and breathing and stress responses). She will need medication to help with her cortisol levels for a period of time post transplant. We are trying to stay positive and are hopeful that neither of these "irregularities" will set her back. There will be a simple test run tomorrow morning that could help give the team an easy answer for her decreased fibrinogen levels. We are praying for a simple explaination because our girl has been through so much and we are beyond anxious to get her home. Home being temporary housing a few mikes from the hospital but still! Home will be where ever we are all together.

More good news: she has started eating! The steroids are helping her have an appetite! Her pain is gone and she's able to take medicatons orally. I can't wrap my mind around the list of medications she will be on for a while after we discharge, but we will figure it out and get use to that new norm as well. Thank god we get this opportunity to. I couldn't speak this let alone write it before, but for the last 9 months there had never been a time that I felt like we wouldn't bring Charlotte home...and that includes her 10.5hr surgery to remove her abdominal tumor. After diagnosis, throughout 6 rounds of chemo, after surgery, after her first transplant, we always knew we would bring her home. But there were a couple days during this second transplant that fear started to shadow our faith. And the conversations about various possibilities and considerations our doctors were having with us becaome highlighted, and Brian and I looked at each other through tears and with fear no parent should ever have.  We had our first real moment where we honestly did not know if we would bring our baby home. I never want to go back to that place. I never want to be there again. You cannot think in those terms and it's not in our nature to do so. Yes we knew she would be sick, yes there would be pain, yes there would be side effects and possible long term complications that we will have to tackle in time...but of course she will survive, right? This isn't the question, is it? But for a brief moment it felt like it was. And that forever changes a person. We will take something besides our daughter home with us from here. We are forever changed in ways I cannot write about in this moment but I hope to someday.

God, thank you for shining a light to guide us through the dark. When fear and doubt started to become stronger than our hope and faith, you put things into motion to help see us through in only the ways YOU could have. You are working through Charlotte and through many people to honestly change our world, our perspective, our lives. I sit here in awe of what I am witnessing, humbly trying to record it. Clumsily trying to give Charlotte's journey a voice. Attempting to be in any way effective (albeit in a stress induced emotional sleep deprived  state) at sharing whatever experiences Brian and I are having. And every single time we feel like the light is growing dimmer, or getting farther away, or becoming out of our reach, you provide us with the tools needed to overcome the obstacles and to keep the courage and faith to follow your  light. We are so close. We can't touch it yet but we can feel it's warmth.

First pass! Hand in hand with daddy 

A visit from great friends 

Out and about! Yay!

Taking mommy to the hospital Starbucks! 

Mommy fail! Too cold but tried to find some sunshine today. 

Simple joys: riding the "window" elevator after hours in  Childrens 

Snuggles 

Our Renoir 

Bingo! Still on isolation in the unit so she plays via walkie talkie in our room 

That smile 

Joy

Riding again! 

Determined 

I saw this painting tonight on a walk in the hospital. I have passed it a hundred times but it spoke to me tonight and I snapped this picture to share with Brian because this is a dream we have. Maybe one day we can own a little cabin on a lake with a view like this. We would have our 3 children, who would be much older by the time we have this place, with us asking if we can take the boat out fishing or tubing or just drifting. Life is out there. This is a season. There is so much out there awaiting us then we could ever imagine. And one day, all of this will be behind us and everything around us will be that much more precious and sweet 

Video: now that Charlotte is 3, she get access to preschool teachers when she is inpatient!