Charlotte's Journey

Charlotte has had the best day so far since she has been hospitalized. She has begun to talk and smile with the nurses here and really come back out of her protective shell she has created.  She actually wanted to play today. Fevers are really spreading out (about 36hrs). That and getting some nutrition via feeding tube is helping her feel better.  The fluid is only a minor concern at the moment but we still need other issues to resolve such as a sustainable white blood cell increase for several days and they are also watching her heart rate closely as she is still tachycardic (rapid heart rate) which could be due to several factors at this point. Team is working to isolate the main cause now but it could simply be the tumor itself which impacts adrenal glands.  Wanted to share a few happy pictures from today: after sponge bath, Popsicle, art and reading with child life here.   These will be the last days for pictures with her "current" beautiful hair. I...

Charlotte smitten as she was serenaded today. He busted out a cool acoustic version of Frozen's "Let it go" which captured her attention and then he got her to come out of her "do-not-touch-or-bother-me" shell and she interacted during an original animal song he sang. In addition, we weren't home for Easter but we still had a special one with the kids coming here to see Charlotte and Doug and Joanne being able to be with us as well. Charlotte perked up with her brother and sisters presence here this time. They are good medicine and she in turn to them. Charlotte is needing some help nutritionally at the time and they have put in a feeding tube. She is tolerating it fine. We are still waiting for 3 important things before we can go home: no more fevers, fluid continuing to be depleted from outside lung area, and her white blood cells beginning to recover from chemo. Still hoping and aiming for this weekend fingers crossed! Man we want her home but we are gra...

From Jen on Saturday, March 26th -  Charlotte actually enjoyed her wagon ride today and wanted to stay in it instead of crawl back into bed. Trying to get her taking steps and walking a little more bc her muscles are weak and "wobbly mommy" as she says. Transfusions yesterday are helping her perk up and our next goal is getting her to eat which she has zero appetite right now. Here is a pic just sitting in the wagon watching a cartoon.

I wanted to share this story from tonight where Charlotte taught me a lesson: The day before she started Chemo, we made a good luck St.Pattys day craft with her hand print in the children's playroom here. To me, it became very sentimental and I have hung it up in any room we have been moved to. We were given a larger room tonight so we could put an air mattress on the floor instead of sleeping in the recliner (yippee!) but upon moving our things, I could not find that paper. It was no longer on the wall nor with any of our things. Frantically, and probably to the nurses insanely, I start looking through everything bc I cannot lose that piece of paper. It meant so much to me--it was a memory but also a symbol of something that I hoped to hold on to and show her when she beats this. But it is gone. I tried not to cry. Tears welled up and I held it together, but Charlotte who is ever so intune knew. As if it was the simplest solution in the world, at 10pm after we were moved into thi...

Charlotte's fever curve is getting better. Instead of peaking at 103 and lasting for a couple hours, it's peaking at 101 ish and lasting an hour. She is off oxygen and breathing well on her own. Her belly has pull backed in size. All of which are good things. Slow and steady progress since Wednesday. All maintenance medicine doses have been reduced and she is no longer on any pain killers. She is at a very low blood and platelet count, so her main line (at the chest) is having trouble staying clotted. But that is "not abnormal". The way Drs. talk. She is run down this AM, consistent with low counts, Day 8 of treatment and a tougher night sleep. But Taylor and Parker will be here soon along with Mommy. No group better to bring her smiles. Very fortunate to get passes for the kids to come up, while the hospital is on flu restrictions. Also helps the older kids get used to wearing a mask. Thank you all for your prayers, positive thoughts and support. We appreciate a...

words can not describe how beautiful this video is (link below). We cannot thank you all enough. Brian's sister, Lynn, reached out to friends and family so she could help make something that would bring a smile to our Charlotte today and in the days to come. Many others have wished to participate and she is happy to edit or create a part 2 so if you have a moment to email her a short sweet or silly I love you message then email her at lrsaltz74@yahoo.com Video password is Charlotte and can be found at https://vimeo.com/160123608

Brian and I keeping waiting to hear any good piece of news to come from her medical team as we cope with this diagnosis and begin treatment, but we were dealt another blow today. Her doctors do not feel she will be ready for release (due to many factors) for another 10-14 days....I want to believe she will surprise them all and be in a good place to come home much earlier then that. But we do not know and they want us to be prepared for her to be here for that length of time. She has been out right refusing anyone to try and cheer her up. Physical activity has been limited but is really important for her lungs and overall help. I took her kicking and screaming into a wagon ride but within a few minutes she settled down and quietly pouted. I wS honestly happy to hear her crying and fighting as she has been so lethargic. She has very little interest in trying to be cheered up at the moment but now that she had a break from the actual chemo perhaps she can be on the recovery side and star...

Good morning! They think we might get to a room later today! Steps closer to coming home! Her X-ray showed improvement with lung fluids. Still fighting a fever and needs oxygen. Finally got put back in solids and ate some bites of spaghetti last night. We both slept better last night too. We didn't get out yesterday so maybe today. We have a wagon and are hoping to take her for a ride maybe even to see the helicopter on the roof:) Got a little kick in the gut with some news specifically regarding her tumor genetics. I was really down and having a hard time last night. But woke to a new day. And Brian has a contact in Cincinnati who put him into contact with a leading researcher for high risk NB and after talking with him we feel better about not just our current plan here at Duke but also about all the new research that hasn't even been published yet which has MUCH better prognosis outcomes for someone like Charlotte. I really needed to hear that and the timing of this doctor ...

This is the hardest thing I have ever written. But we share this news because we believe in the power of prayer and in drawing strength and positive energy from those who love us. I write this while in heart breaking grief that is all consuming but also from a place of faith, strength, and a determined spirit. Our Charlotte has been diagnosed with stage 4 high risk neuroblastoma, a rare childhood cancer. We are surrounded by amazing doctors and nurses and the most supportive and positive friends and family. But everything has happened so fast and still continues to do so. Her abdominal tumor is large and surrounds much of her abdominal organs. It has spread to her bone marrow. But children can and have survived this. She can do this!  The doctors here at Duke have a plan that we have just begun and so Charlotte has just started Chemo, the first of many phases in this plan to kick cancers ass. As we fight with all of our might to save our baby girl, we thank you for your prayers a...

Charlotte has improved since we've been admitted to the PICU. It appears they want to keep her here another day or two though as they tried to get the fluid off of her hopefully without using invasive chest tube. I have asked for some help to possibly have her get out of bed and get out of the room for a little while later today. She is hooked up to so much that I'll need help doing that and I think it will do her good to get up and about. She slept better last night. Is sleepy today and I can see how day and night become a blur while you're in the hospital. X-ray this morning showed fluid has not changed outside of her lung but they are trying to help her body absorb this fluid and excrete it. Today will be her fourth day of chemo, no nausea, and tolerating it well I think. Still praying we can be home by this weekend. From Jen on March 22, 2016 @ 9:51 AM EST The Reynolds family has requested that this blog and any postings are NOT SHARED on social media at this time.

Charlotte has had a restful day and just fell asleep like a baby. We are in the PICU another night while they keep her on a high level oxygen to help her breath easier. Her swelling has not increased and even looked to have decreased a little today. They are flushing her system and giving diuretics to help her absorb and excrete any extra fluids accumulating in her body which will reduce her abdominal swelling and then help her breathing. Once that's under control we can go back to a private room. Fingers crossed tomorrow. They will X-ray first thing in am to check the large fluid pool that is outside her lung area and the hope is her body will take care of that on its own.  She had some great daddy time this evening talking and reading and even ate some soup broth and Italian ice, which is the first food she has had since Sunday am. She is really starting to get use to all the invasiveness. I heard her thank the nurse unprovoked after they checked her vitals before she fell...

We are in ICU for the foreseeable future as they monitor Charlotte. The believe she is having an inflammatory response to the chemo. The tumor is swelling and releasing fluid so her abdomen is swelling like a ballon and they also found a large fluid pocket outside of her lungs they are watching. Her breathing is labored with the abdominal swelling so she is on oxygen and some pain meds. Sleeping in ICU is near impossible so she is tired and hasn't been allow to eat anything since yesterday morning. But we are were we need to be if her condition changed rapidly. For now she is no better or worse then last night according to Drs. Please keep praying and we will keep trucking here with positive thoughts that her body's response is in indication we are killing the cancer. From Jen The Reynolds family has requested that this blog and any postings are NOT SHARED on social media at this time.

Charlotte has been developing a few concerns today and after a big scare that turned out to be ok thank god, we have been moved to the pediatric ICU for hopefully just tonight. I won't go into details right now but Drs are monitoring her for a few reasons and she is stable and comfortable. The initial information looked like she might need to be rushed into the OR for internal bleeding, but that has been ruled out thank god and the info they are watching can be explained by some other things. Keep praying. We are holding on over here. Charlotte is comfortable, resting, and quickly becoming the sweet heart of the ICU. We are hoping to return to our room tomorrow. The Reynolds family has requested that this blog and any postings are NOT SHARED on social media at this time.

First day of chemo was yesterday. She started getting a fever in the evening and they said this isn't uncommon after surgery but they are taking precautions by checking for bacteria in her main line and giving her an antibiotic while we await those results. Yesterday was a sleepy day and she was on some pain meds that enabled her to relax comfortably. Taylor and Parker were able to come visit in the morning and we did some light educating with what is happening with Charlotte. They did great and it was important for those 3 amigos to see each other again. They even received their own stuffed animals with a Broviac main line for meds so they could learn about Charlotte's. Our good friends Brad and Sandy also came to see their girl and sit with us for a while as she began her treatment. As we look for any good news any time we can get it, the doctors gave us some. If she tolerates the 5 days of chemo well, then we should be able to bring her home for recovery as early as Wednesd...

Our girl has had a sleepy day and some pain medication for discomfort. Taylor and Parker came to visit this morning and that was much needed!!! Her spirits are low and I think she wants to be "all done. All better momma" as she tells me. Good news: she started her first round of chemo today and if all goes well, she has chemo here for five (5) days and then she goes home to recover a couple weeks until round two (2). We will take any good news and we want her home!!! From Jen on March 19, 2016 The Reynolds family has requested that this blog and any postings are NOT SHARED on social media at this time.

Charlotte is awake (picture included). They got the biopsies they needed through core vs. having to open her up.  Line is in. she is sore and tired but we are with her. She did awesome!   Quite a bit longer than they expected her to be under but still safe. Longer doesn't mean complications. Coordination of anesthesiology, radiology, the nuclear bone scan team, pathology, oncology and the surgery team just takes time to line everything up, transport, etc. She did all that today!  Such a fighter! March 18, 2016 @ 4:30 PM The Reynolds family has requested that this blog and any postings are NOT SHARED on social media at this time.