Charlotte's Journey

  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

Charlotte woke up to a beautiful Christmas morning with her daddy. She has improved so much, they took her off oxygen today! What a gift! We have more gifts from God then we can count at the moment. One of the biggest gifts are Brian's mom and step father, Schuey and Neal, who have devoted themselves to our family this year and without them...We don't know what this journey would have looked like up to this point. And this Christmas, they selflessly helped with many of the details so we could provide our children with some normalcy at Christmas. Even yesterday, since Charlotte has improved so much, they came to sit with her so Brian and I could take Taylor and Parker to the Childrens service at our church, and enjoy dinner together at home. We even squeezed in a little present time last night before Brian came to stay with Charlotte. And although we woke up in separate places, apart from each other Christmas Day, the JOY was stronger then ever. Charlotte is doing it. Our fami

I have so much I want to say but I can only muster the emotional energy to utter (write) these words right now: Charlotte is improving. The doctor verified our hopes when he came through on rounds. The first words he said with a smile was "So its good news you are only seeing me at 3:00pm!" And don't we know it! She's been a first morning case for many days and we have learned that the doctors are happy when you are at the tail end of their rounds. She had an awesome night, tolerating a decrease in oxygen requirements for most of the night. And best even--she has sustained a decreased flow of oxygen today! We think the treatment is working. We need it to keep working, relieving inflammation so our girl can repair her damaged lung tissue before they are depleted of oxygen for too long. We don't want any scarring to cause long term effects. But of course, at this moment in time, we will take any signs of progress in the right direction. We cling to these we signs. A

You all have done more then you can ever know and are such a part of this journey/her story. We can't necessarily say she's improved yet with the new steroid and a new strong antibiotic but she's having a good day and perhaps what we are seeing WILL translate to improvements the team needs to see so that we can avoid anything invasive that could have serious risks. Brian and I hit our lowest point. I feel like I'm coming out of it...this evening suddenly there's a peace, a calmness. I feel more clear minded, more trusting. I want to believe it's God with us. I want to believe he's telling me it's going to be ok and Charlotte is going to get better. She can do this. We can get her home. We just need her to respond to this treatment. Thanks so much for praying and please keep it alive. She has such a long way to go and we are needing to see her making progress but are grateful that she seems steady and in excellent spirits. This champ is even having to swa

Whether you are or aren't the drop to your knees praying kind, please pray for Charlotte and help God hear our prayers. I can't believe I'm writing this because we had thought Charlotte was taking a turn towards healing but today there has been some new developments and the team is concerned. Charlotte's lungs appear to be showing increasing signs of damage from the cumulative effects of Chemo on her little body. We have begun a treatment trial in a steroid with the hopes it can suppress the inflammatory response we are seeing so her lungs can repair. She seems to be teetertottering towards getting better or worse and this medication could help her get over this hump. We will know if it's working pretty quickly. Please God, hear us. Help her heal. Please bring our baby girl home. Please help her keep going and keep moving. We believe in the power of prayer and have witnessed it's powers. We are so grateful and are trying to hold on strong to hope and faith that

As I type this, Charlotte has been tucked in for the night yet is quietly laying there in the dark chit chatting about who knows what to herself in between singing Katy Perry's Roar. Needless to say, let's take this as a good sign. Charlotte's over all behavior resembles that of a child who is simply feeling better! Perhaps she is presenting before her symptoms catch up because aside from her behavior, we seem to be in limbo here. Today, the doctors seem to be coming to a common consensus amongst themselves with regards to Charlotte's slow recovery, respiratory issues, and higher heart rate. The team had a lengthy review of Charlotte this am they told me on rounds. They are doing another panel today hunting for viruses that could be contributing to Charlotte's complications and slow recovery (in top of the cold/rhino virus we know she's positive for). The team has concluded that in absence of other evidence that they have investigated, they believe what we are

I didn't want to leave anyone out there hanging and wondering how Charlotte is doing, but we are still (gratefully) in limbo here. From what we can gather, it's just going to take more time for our girl to heal then the first transplant. This round was really hard on her, damaging much of her heathy tissue along her digestive track and now, evidently, her lung tissue. The damage appears to be in repair without any signs of chronic issues as far as we can see from all the tests and imaging. It's just all been so scary that I feel happy simply standing still. We can see her slowly improving in many aspects so maybe we aren't exactly standing still. We are slowly tapering down on the oxygen here and there watching how she responds, sometimes we have to go back up if she's actively playing. She's taking in a lot more water and one oral medication as swallowing appears much easier to do now. Her nausea is still evident with episodes of throwing up on and off during

Charlotte's vitals and stats were stable all night only requiring the low flow oxygen to maintain her requirements. We both slept remarkably well, perhaps out of sheer exhaustion on my part. Today we woke hoping to find some answers to what's going on with our Charlotte. The team ordered a chest CT with contrast to get a more detailed image of her little lungs that are working so hard to breathe these past few days. Your senses sharpen when more invasive tests are ordered because you know that these doctors have seen the best and worse case scenarios. My hope was that they were continuing to be thorough, leaving no stone unturned. One of our favorite nurses who has been with us through the past few days assured me that's what she thought they were doing too. But you always fear they are suspecting or atleast concerned about finding something on the scan or what run it why she's stable? We didn't decline at all last 24 hrs. They didn't want to sedate Charlotte

with so many caring and praying and cheering for our Charlotte, I'm so grateful to have this central place to post updates. I am only now catching my breath from today's flurry of activity and information. She is currently napping comfortably and is stable. This morning started with a team of doctors coming in to evaluate. The ICU rapid response team came in to evaluate and consult with our BMT Team. For now, Charlotte's oxygen requirement can be met here in her room. Along with some additional pain management changes and  medications, more tests and an X-ray, and possibly a CT scan later today or tomorrow, the team is leaving no stone unturned. Obvious reasons for her declining respiratory function are being assessed and ruled out. Our hope continues to be that this response is due to several factors combining that can easily be addressed and she would recover from in time. Like a "perfect storm" type scenario where the rhino virus, mucositis, fluid over load, in

Asking for prayers as we tackle what we are hoping is just a road bump in recovery. Things have moved pretty quickly last 24hrs. Charlotte's pulse ox has been showing low oxygen saturation past couple days. She has needed some minor oxygen support at night but today she plummeted. She is requiring oxygen support during day and night as her oxygen levels are down in the 70's without thisnsupport. It should be closer to 100. Along with a couple other findings, the team sprang into action this morning and much of the day has been a whirlwind of tests. She was given an X-ray a couple days ago when this began and it was repeated today. Along with much blood work, an abdominal ultrasound, and heart echocardiogram, the team ordered a battery of tests to determine what was going on. They are trying to rule out serious conditions that can develop during transplant, such as pcp pneumonia which can be fatal in these kids. Charlotte, however, is feeling pretty good. She is battling mostly

There is a family here (again) who was here during our first transplant. They have a 5 year old boy who is being treated for an immune disorder and received his bone marrow transplant a few weeks before Charlotte's first transplant back in September. They are from Florida. The little boys parents took turns being here with him for his transplant, taking turns here and in a hotel, leaving their 13 year old daughter home with family. The mother was very pregnant with their 3rd child. When I met them all I could think was  "WOW. It must be so hard to be so far away from their daughter for so long and so far from home, family and friends. They have no one near to help them. And missing work for this long?! And I don't know how she's doing this as pregnant as she is! How can she sleep on this bench they have built into the room for a parent. We are so blessed. When I feel down or feel like we have a tough road, there is always someone else whose road seems harder." Tho

Charlotte's had 3 days of great WBC growth and is considered officially engrafted. She is still dealing wth some pain and we had to increase the morphine yesterday to help keep her comfortable , but her pain and symptoms from this round of chemo should resolve quickly. She has some swelling from fluid retention and also some strange sleep disturbances (similar to sleep walking where she is having several episodes a night and during naps where she is sitting up completely out of it and yet still sound asleep) but those are likely side effects from medications. We should be weaning slowly off morphine very soon. And once she doesn't need so much pain medication through her PCA then she can have more time off her IV pole so we can take her out of the unit on a walk. She has been confined to just this room for 3 weeks now. And because she tested positive for a cold virus when we were admitted, she still isn't allowed to go to the playroom or do certain activities out of her roo

We woke to a jump in white blood cell counts including a "score" of 750 for her absolute neutrophil count (ANC) which needs to be over 500 and growing for 3 days! So today is considered day 1 of 3 before she will be considered engrafted. With this news comes pain relief for our little warrior. Needless to say, neither transplant round was a walk in the park and each had its tough moments, but because her pain from mucositis in her mouth was greater this go around, relief can't get here fast enough. She is perking up, feeling less pain, acting less irritable, and had her best night sleep in weeks last night. Therefore, as long as things keep going as expected we should be healing up nicely and begin to plan for discharge after another week (and maybe some change) here. Charlotte will still remain is isolation, unfortunately. Once she is feeling well enough to want to run and play this will be tough but perhaps by then we can begin to use our "day passes" to lea