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...