Charlotte's Journey

Prayer warrior request: please stop and say a prayer for Charlotte's buddy Austin. 5 yr old Austin was as close as a friend Charlotte could have in a place like the bone marrow transplant unit where kids have to keep their distances with limited playing etc. I think he reminds her of her brother Parker...he would check on her frequently often bringing her a piece of some art he colored and they would ride bikes together when they felt up to it. They both seemed a comfort to one another. One often motivating the other to get up when possible. He has been moved to the PICU and is having many complications. My heart is breaking for this family and I keep praying and visualizing the day these 2 kids can meet up again outside of the hospital and be kids together. Please God, hold Austin and bring him through these tough days. Sending hope and faith and strength to his mother who is by his side. We have seen the power of our prayers and I want this family to feel them as they navigate th...

HOME After 2 months, back in her own room enjoying her Christmas present from us Heading home from apartment Oh happy day First request: take a scooter ride on this 70 degree day Nana Schuey love  With poppy and nana Schuey  3 amigos  Opened a few gifts. We just couldn't put away Christmas until she came home  You can't see it here, but Lucy's reaction to seeing Charlotte was priceless. She spun around a hundred times so excited  Playing

I didn't want to put away our Christmas tree or any Christmas decorations until we brought Charlotte back home. We had expected her to be home by Christmas. And I just really wanted to feel like we had time together home to celebrate Christmas. I thought we needed it to look like Christmas to feel like Christmas: tree, lights, decorations, music, presents, cookie baking, traditions. But I was wrong. Last night, here together without any external symbols of Christmas, at our 2 bedroom outpatient apartment here near Duke in Durham, it felt like Christmas. Dec 25 is just the day designated to pause and celebrate Jesus's birth. But that is just a date. Christmas, celebrating Jesus, can be observed any time you want to pause and feel the Christmas spirit. Last night was our first night together as a family in 7 weeks. The children were playing, my husband and I cuddled up and had a glass of wine, snow was falling. In my heart, it felt like Christmas. The peace, love and joy that the...

She did it. We woke to really good numbers with a great improvement in her clotting factors. And one of her tests returned negative for what the team had suspected as a rare acquired hemolytic Autoimmune disease. They have decided since she is clinically stable, we can investigate her strange red blood cell situation as out patient. So for now, just want to share a few very happy pictures of our girl getting her well deserved confetti parade. To say we are emotionally overjoyed and exhausted is an understatement. So for now, we will bask in her moment and recognize God answering all of our prayers. We are so humbled and blessed. We have moved into the out patient apartment while she is in out patient care with clinic appointments every day (including weekends) and once those taper off as her needs decrease then we can bring our girl home. Her prize has always been home with her family.  Thank you all for your fierce love, encouragement, and prayers. Confetti parade ...

I tried to write yesterday in between crying, pulling myself together for Charlotte or my other kids when we had family time, researching medical info, and praying. The beginning of this post was written yesterday and finished today. I kept the "journal" this way for several reasons. One, I'm too tired to revise. Two, it accurately documents part of the rollercoaster we are on at the moment and I try to keep this experience authentic. Three, it best depicts God's never ending unfolding of mysteries at work Jan 1, 2017: We received some upsetting news today. We are digging deep in order to spin a positive light on this development. Mostly because we are simply human and at our roots we are worried, emotionally and physically exhausted, typical parents who love our child in ways that no words can express. We just want to be done with this phase of Charlotte's treatment. We want her to have some peace and recovery out of this unit. We don't want her to go throu...

  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 ...