An unknown battle occurring in our Charlotte--discharge on hold

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 through anymore. We are human, we are typical in these ways. But what is being asked of us at this moment is anything but. We feel like we are being asked to swallow the lump in our throats but it repeatedly returns only for us to swallow it again. And it hurts to do this. So to give us relief from the fear and worry that causes our pain, we pray for God to show us the way to do this thing he is asking. And that is the only way we can muster the perspective we are trying to have at this moment: that all that is being uncovered right now is actually a hidden blessing. There have been 2 terrifying discoveries during this transplant. One I have yet to write about but will do so once this transplant is over and we move on to radiation. The second is unfolding in front of our eyes, playing out right now as I write this.

Our Dr.Driscoll has begun quite an extensive investigation of some very rare occurrences going on with Charlotte. It's so complicated and we are tying to digest and understand it all but right now all ideas as to what they are seeing is speculative. It appears her body has activated a complex immune response to something and in its wake the red blood cells are being damaged. The results we are waiting on could confirm there suspicion that our girl had developed a very rare Autoimmune disorder. This specific condition is NOT life threatening. It could self resolve in time, or it. Luis be chronic. One thing is for sure, Radiation cannot begin until we know what is going on. There is an unknown battle occurring in Charlotte. More tests have been ordered and discharge postponed.

When Charlotte started to have complications weeks ago, many tests were ordered. Therefore, certain things were looked at that wouldn't normally be looked at or normally measured in a patient such as Charlotte. There was a standard test that measures a special protein your liver makes, a clotting factor called Fibrinogen, but those numbers started declining. So an additional test was ordered to test for some levels in the complement system, which is part of the immune system in the plasma portion of blood. Fibrogen's trending decline was a concern but an additional level of a protein, haptaglobin, in her blood was also off and they have sent all this info off to Cincinnati Childrens for an opinion from some experts there. In addition, another clotting factor (PT) that was way off. Our own Dr here, who is the head of Duke's PBMT unit, is "perplexed" as he has unnervingly said. We do not want this man to be stumped. And he wants to get down to the bottom of this because Charlotte cannot continue into to radiation with levels as they are. So that is where the blessing lies. They normally wouldn't have investigated a panel that appears to be showing some immune response that had been activated. That test isn't typical so the fact that they explored this information at all, uncovering whatever defect is occurring a huge blessing. Radiation can cause vessel damage and her clotting factors and other proteins in her blood need to reflect a healthy level for her to risk the effects of radiation. So we have found this issue before radiation damage could have put her at more risk of more complications. Thank you God for this.

So for the first time in 9 months, we are actually looking at a senario where Charlotte cannot keep moving and keep going right now. Not until this resolves. they've also changed some medications that could be contributing to what is being seen, although highly unlikely. Our hopes are all of this is a simple fix. Or her body is healing but it's doing its job and these effects are part of it? I don't know. I'm grasping. I'm gasping. I want to scoop up my baby and run with every fiber of my being. But that fight or flight syndrome is another human response. But we are being asked to stay calm, stay focused, stay positive, and from what I can tell...stay here. I am so afraid. I am so afraid I cannot do what is being asked. God help me. And I'm so tired, aren't you? You have all loved us fiercely for so many months but how many times can I ask for prayers? The words feel heavy and labored to me. I want to paint an inspiring picture of a child who is doing amazing things glorifying God as she does them. And most of the time that is authentically how I feel. It is what she's doing. But right now, the act of praying or asking for prayers feels too much. I can't seem to muster the strength and I feel a burden to do so. But please God please bring us through this. Please help us keep chasing the light. Please send us a rainbow

Jan 2, 2017: I wrote most everything above yesterday. I hit such a low point last night and was angry from exhaustion, worry, and fear. I told God he asked too much from our baby girl and from Brian and I. Just before I went to bed, new results in had shown abnormal sizes of red blood cells on a blood smear test but no evidence of destruction of red cells like team expected. It was another puzzle. Turns out the shape of her red blood cells is a marker for this specific Autoimmune disorder our Dr suspects. I prayed and pleaded and asked God for a rainbow last night....in some way some kind of rainbow! I needed this. I needed to keep my hope and faith. I woke up this morning to good lab results--Fibrinogen is improving and the PT level (a special clotting factor) is back to normal and hasn't been there since dec 13 when complications began! Dr is happy. And  little Charlotte who was so weepy this am, crying that she missed home and family, asked to paint. She then asked to do a "rainbow handprint." All her own idea. It was the God wink I needed. He is here holding our hands. I feel it. Today I woke with a calmness; a peace within me. I can feel the deep breath whereas yesterday I felt like I couldn't gasp for air.

In addition, another good piece of news, is her new bone marrow is demonstrating its health and it is performing very well. Numbers have shown it's  is working double time to pump out extra red blood cells during this time so she is actually making twice the amount she would need if this wasn't all happening. Atleast her bone marrow rescue/transplant was a success even though at a cost we won't know the extent of for a long while. Interestingly, some patients are here for a bone marrow transplant to cure them of autoimmune disorders. Charlotte might have developed one as a side effect from this process. Brian and I are trying to wrap our head around all of this. Walking with one foot in front of the other. Having to trust basically complete strangers with what is most precious to us while trying to hold on to our faith. God is at work here. We feel it. He is guiding her team, us, nurturing her spirit that continuous to blossom and amaze us as it develops in front of our eyes. The last 48 hours have been an unbelievable rollercoaster of emotions as you can imagine. Planning for discharge only to have team uncover new info that could now potentially be a new disease she will have to battle. How does one keep there momentum moving forward when we often feel like we are being sucked into a vacuum. There is only one answer. And I feel like on this journey with Charlotte, I'm finally getting to know Him.

Charlotte, out on a pass, laughing at snapchat tonight with Taylor and Parker at the apartment we have rented for her out patient stay 

Happy, waiting for her crew today 

Making mommy an impromptu much needed rainbow 

Posing haha 

A God wink coming from Charlotte's imagination. Truly amazing 

First time in the car in 7 weeks! 

Slowly moving into apartment and patiently awaiting discharge

We have had 3 days in a row over this holiday weekend able to spend several

Hours together at the out patient apartment! This has been great for everyone, especially the kids, but has also created a sadness in Charlotte when we come back to the hospital because she longs to be home with Taylor and Parker 

A rainbow appeared to my good friend Jaime as she and her husband were leaving one of my most favorite vacation spots in the Virgin Islands