The confetti parade that will never happen

I began the post below several days ago, but left some of it open because I hoped perhaps the story would change. It didn't. First, Charlotte is still trucking along here 6 days post transplant now. We are in the thick of it painwise managing her symptoms such as mucositis. The mucositis is worse in her mouth and throat this go around. She is almost maxed out on the amount of pain narcotic, fentanyl,  they can give her, which is requiring a combative medication because at this dose she is clawing at her itching skin. She can no longer swallow anything by mouth, even taking a sip of water hurts. And the mucous being produced along her digestive track hurts going down as well as coming back up as she vomits. Indeed, we are watching her in the throws of the awful symptoms bone marrow transplant causes. But she can move through this pain and we are keeping our eyes fixed on the light at the end of the tunnel. We could see her reach a point of relief in a few days if her baby stem cells start to show signs of regrowing her bone marrow. There are no words to describe watching your child go through this, but because we know she is moving towards getting better even though this part is so hard and ugly, we are staying positive and embracing the little moments she gives us where there is a smile, playful banter, a giggle, a cuddle that she will allow, a soft hum of a song when we are sitting here quietly, or even like this afternoon a crazy burst of playful energy that came out of left field. Our prayers focus on her healing and her cells growing so she can conintue to move forward. So one day in a couple weeks, we can march out of here again under raining confetti which signifies the victory of a successful bone marrow transplant. We pray for this moment and for many moments that are still possible after this place is a memory. But right now, I also ask for prayers to be directed at another little soul. She will never get her confetti parade.

When you enter Duke's PBMT (Pediatric Bone Marrow Transplant unit), you will see an L shaped hall with 16 patient rooms. They like to leave 3 or 4 open for emergencies or unexpected patients that may need to return after they've been discharged for various reasons. Then, if you are the parents of a patient like we are, you remember the discussion that the doctors have to have with every parent before admission. They advise you to do your best to focus on your own journey here as everyone's journey and disease is different. They warn you that the likelyhood of a patient, lets call them a child because they all are, the likelyhood of a child passing away on the unit is very possible. Then you think to yourself, this can't be. There are only like 10 kids in here including my own. Someone came here to get better and they will never leave? And you quickly dismiss the thought. You quickly hope this warning is meant as a precaution and may be an exaggeration. The staff is so upbeat, friendly, and happy. There must be some mistake. This is the place that children who have no other option for survival come to get better so they can grow up.

You keep your blinders on for a while. You are so focused on your own child and the newness of this place that you need to stay sharp and single-minded. You can't deviate or be distracted by other's circumstances. And then comfort and familiarity set in. This small handful of families are also in this tight space for weeks to months together. Little ones, like Charlotte, easily seek and find comfort seeing other children like them in the halls and playroom. Naturally, conversations begin and lives start to intertwine even if only briefly and because you are both in the same boat you can't wait to get out of.

All pathways leading home are not necessarily equal in this place. Of course each child has their own course along with their own medical history and individual circumstance. We know this. But when you are here, it doesn't matter. You start to identify with these other souls going through what you are also going through. You can find solace and empathy in the knowing glances, and strange humor among each other. And if you are like me, you realize that perhaps there is a way to keep some blinders up but also perhaps crack the window a little bit because man you need a breeze! Sometimes it feels better to feel like "we are all in this together." We cracked our window to a couple families on this journey. And one of them has just had to make the decision no one ever should have to.

Chloe, who I wrote about last Wednesday asking for our village to pray for her, has not responded to the last resort. She was taken off life support. The Oscillating breathing machine keeping her alive is not meant to keep her breathing long term. It is too rough on her little 3 year old body, just like the bone marrow transplant she received was. Her little body gave out and her family had to decide it is time to stop care. Her grandmother came back into the unit briefly a couple days ago while they were coming to terms with making this decision. And a nurse brought her to my door as she received my note letting them know we all have lifted them up in prayer. You could see her exhaustion, and her tears had all dried up. I was no help consoling her--she seemed to be there to consol me! She wanted me to know that Charlotte is not Chloe. She probably saw some of Charlotte in Chloe like we can see a little of Chloe in Charlotte. Part of me kept praying with all my might that some miracle would occur before they had to take her off support, while the other part of me wanted to drop to my knees thanking God it isn't our daughter. And that's a huge part of my emotions, isn't it. That could be Charlotte. We grieve for this family but this also strikes up our own fears. It shakes our ground. Chloe passed away on Saturday, November 26, the day after I saw her grandmother.

There are people out there following Charlotte's story who hold their little ones a little closer because perhaps they can relate. Our little family of 5 was just like theirs. That's how I feel about Chloe. That could be us, but it isn't. And we are doing everything possible to ensure it won't be. God is here with us. God is there with Chloe too. But right now, we aren't meant to understand why her journey has turned out the way it has. We keep trying to keep going, keep moving, while Chloe's way forward is in a direction I can't understand.

The day we moved back here for this last transplant, we noticed our assigned locker was full of possessions and our assigned kitchen cubbord shelf was also stocked full of food. The people that were in this room hadn't finished moving out. I knew Chloe's room was near the one we were assigned but she was getting close to discharge when we left so I figured they had moved out quite a while ago. Turns out we are here in Chloe's room. The last time we saw this family they were clapping and smiling at us leaving the unit after Charlotte's discharge confetti parade. The unit always throws a confetti parade as you exit the unit after you are discharged following transplant. Most children would get one but because Charlotte's unique protocol calls for a double transplant, she will get two parades.  Chloe will never get her parade. And all I can do is helplessly lay here in her old room and cry and pray and wonder WHY?!! But we will never know that answer. So maybe that's the wrong question. God, help us learn the right one. Perhaps in that knowledge, someday, we will know why we came to know a little of Chloe, why we intersected for this bit and our lives touched, and how we can honor the little one whose fight never got to be honored with a confetti parade.