Charlotte's Journey

Stem cell harvesting was a complete success! We got what we needed and more! We have extras just in case and then some! Her body did everything it was asked to do and Charlotte once again was an amazing trooper through it all. She even laid still for 45 minutes while they struggled getting her sutures out from her temporary catheter that was inserted in the OR. It was unreal. She seems to know when to let the medical team help her and she saves her rebellious side for Brian and I haha. We just wanted to let you all know that your prayers were felt, heard and answered. Today, she is playful and feeling wonderful. She will have a few days home and then we will be admitted Monday for round 3 of chemo which will last until Friday. Duke Childrens is beginning to feel like a second home. She is so much more comfortable here now, especially at the clinic check ups. She is making friends with the staff, her nurses, and many of the amazing child life specialists that help bring joy to all t...

Charlotte is out of surgery and has woken up from anesthesia. The procedure was a success and now we are hooked up to a pheresis machine which will harvest her stem cells for the next 4-6 hours. She is now comfortable and was finally able to eat something (was borderline inconsolable for some food haha...she takes after her mother there😁), she is resting peacefully unaware of all the business around her. In true Charlotte form, before the OR procedure, she stood her ground and in no way was going to accept the changing from her comfy PJs into the hospital gown. I tell you this because it is an important characteristic that is innate in Charlotte and we want everyone to know that this little girl you are cheering for is strong and determined. She has a strength, a spirit, a drive about her that cannot be squashed. She will not lay iddly by and choke down her own opinions on how this show will be run. Oh how we love this about her. Even upon waking up, her persistence for muffins (hey a...

It feels like the perfect storm. Yet this storm is full of good news which, I'll tell you, we can really really use. Funny how the term good news is relative. CHARLOTTE WILL HAVE HER STEM CELLS HARVESTED TOMORROW! All the perfect conditions have some how come together! The severe adenovirus viral strain is no longer detected anywhere. All of her blood results are showing everything is not just optimal but PERFECT for harvesting. This includes a way above average number of a specific protein count (P34) indicating the amount of these baby stem cells we so desperately need. She is way way up and that is great great news! So, tomorrow we go into the Operating Room bright and early for a special line to be put in for harvesting. Afterwards, she will come out of anesthesia and immediately go into a room for the rest of the day where this machine will basically filter out all the necessary cells from her blood. This is out patient and we can come home tomorrow evening when all is compl...

We were discharged and are home tonight😊 She is feeling wonderful and is actually in rare form being beyond silly with a ton of cabin fever type energy haha. So grateful this fever turned out to be a quick temporary hospital stay with nothing major. Perhaps it'll give her a little extra confidence for next week when we are admitted for round 3 of chemo. This next round has 2 new chemotherapeutics she hadn't been given yet so a whole new bag of tricks. She will be hospitalized for the next round because it requires so much hydration before and after the chemotherapy. Tomorrow we return for an appointment and hopefully get the final information with regards to harvesting this week or waiting until next round. And just so you know...our little fishy friends were still there swimming happily together❤️ Wanted to include a picture of our fish friends because so many of you told us how much you loved the fish story I posted a couple weeks ago☺️ Passing the time with wet pape...

Charlotte spiked a fever last night and we were admitted. Good news: fever free this morning and she is feeling fine. Unfortunately these neutropenic fevers, fevers after chemo when her white blood cells are low, are common and part of the process with her type of chemo. They don't necessarily indicate an infection but they do mean hospitalization for evaluation to rule out anything serious. She is acting goofy and quite charming so I suspect she is not sick:) Her counts are rising as well so that is good news. Once her counts are up a little more and she is fever free, we will be able to go home. Hopefully in another day or two.  She is being a complete pro and charming all the nurses. She knows she gets to go home when she's all done with her medicine. Her understanding and realization of this has really helped her except being back in the hospital for now. Knowing she gets to go home will serve her well going forward! So please pray fevers to stay gone and her white blood ce...

The doctors have decided to post pone the stem cell harvesting by atleast a few days to see if she is clear of this adenovirus. Although she is not sick and is completely asymptomatic, the repeated nasal swab detection means there could be some virus still in her system and is too high of a risk to harvest cells with possible infectious contamination present. If she isn't clear by Monday, then we will plan to harvest next cycle. If after our Saturday and Monday appts she is in the clear, then we will still have time this cycle. Several of you have reached out and said some very reassuring and truthful words recently. You remind us that we just need to trust that these vital cells will be harvested at the best possible time and we remain grateful for the thorough efforts of our medical team at Duke who are taking such good are of our little girl. After initial disappointment, we are now keeping our eyes focused forward on completing this cycle and scheduling the stem cell harvesting...

Your/Our prayers worked:) Her blood tests Friday came back negative for the Adenovirus, which is good news and what we hoped for! However since her nasal swabs were positive twice, apparently it isn't necessarily going to clear her for the stem cell harvesting which is scheduled for Monday. We have a consult appointment Thursday with the transplant doctor who would like to examine her and consider all the results, including more from today before he decides if now is the best time to retrieve her baby stem cells that will rescue her bone marrow after all 6 rounds of chemo are complete. Although ideally we are able to harvest them this round, we would rather harvest healthy cells with no infectious contamination so we will trust in the Doctor and see what he says Thursday. As anticipated, Charlotte's blood counts are down. So she needed and received a blood transfusion at today's appointment. Her color is already coming back and after watching her literally pretend to comp...

It's days like this when we see the life and spirit of Charlotte in full force that it is so hard to believe she has cancer. How it is possible that this little light is as sick as she is and is battling this horrible disease. She has had such a happy weekend home. She is playful and cheerful and showing all little snippets of the old Charlotte who had not been well enough to play like this in months. Charlotte started showing extreme fatigue in early February which is why we went to the pediatrician. They did a CBC and found her hemoglobin was low. They didn't see anything else troubling so they asked us to come back for several weeks to see if her hemoglobin would recover on its own as there are temporary conditions that could cause this. She had no energy to play or even walk around after a while. Then her appetite decreased and she had constipation that wouldn't go away no matter what we tried. Her abdomen began to enlarge as well and we knew we needed to get to the bot...

Charlotte is tolerating the second round very well so far! Just finishing day 3 of 5 in chemo and then she will have a recovery period. No fevers, still has an appetite, and some energy to play:) We'll take it in and soak up these moments where she is feeling like herself. Coming home each evening has really helped her spirits. It has helped all of our spirits. The other morning, I buckled her into her car seat to begin our drive into the hospital and she tilted her little head looking at me and said, "God is powerful?" It took my breathe away. What she was doing was requesting a song that she likes from a Vacation Bible School CD I have in my car from last summer when our preschooler, Parker, attended our church/preschool summer camp one week.  I have never been a Christian rock/pop music listener, but this year after getting this CD and seeing how my children like it, we have all been enjoying the music and the messages. When Charlotte said those words, it rang deep w...

It was exactly 4 Monday's ago. We left our pediatrician and ended up here at Duke Children's just about this time of day where we were about to receive Charlotte's cancer diagnosis. It was any parents worst nightmare as we came to learn and understand this diagnosis. It feels like 4 months ago. We are still coping and feeling our way, but never in a million years could I imagine being in this "place" that we are today, emotionally and spiritually. We are still coping and going through the grieving stages, but hearing the news today that Charlotte is healthy enough to begin round 2 was great news. A couple weeks ago, hearing that your child needed chemo was gut wrenching but today it is music to our ears. It means Charlotte has recovered from round 1 and is ready to continue to fight and heal while we all cheer her on. Her spunky spirit is back. She had a wonderful, restful weekend home playing with Taylor and Parker and also getting to see some family and a few f...

For many of us, when we are going through tough times, we might be more susceptible to signs. Maybe we are subconsciously looking for signs from above to help us feel like God or our loved ones are with us. I believe in signs and think if we are open in our heart and minds, they are all around us. Helping to give us peace, a nudge at times, a reminder, or a "hug" of sorts. So I wanted to share this story about the hospital fish and our rainbow. On the children's floor of the Duke Childrens Hospital, there is an aquarium outside the elevators. We would go for a wagon ride by those fish daily often more then once. There is a small school of little fish and two larger orange parrot goldfish. Charlotte would call one the "baby" and the other the "mommy" (or daddy if it was Brian walking with her). We loved watching them. The mommy/daddy fish seemed to fuss about the other "baby" fish often. Followed it around giving what looked like fish kiss...

What a whirlwind the last 48hrs have been. First I get a stomach virus while in the hospital with Charlotte. Then Charlotte spiked a fever and we worried she might have caught it. But it was a quick one time spike on Wednesday morning and she looked so good Thursday with no fever for over 24hrs, cultures negative, her heart rate improved due to the new meds, and her chest X-ray clear, that the doctor's decided it was time for our girl to come home for some R and R before round 2 of chemo that will begin on Monday. The kids were so surprised when we all pulled into the driveway. Charlotte was over come with emotion initially when she learned it was "break time" from the hospital and "her turn" to come home. "Me too?" she asked. Yes, baby, yes you too. Our hearts haven't felt so full as when we were a once again home together. And we will give her rest, TLC, and familiar comforts as she gears up for this next round beginning Monday. Thanks everyone ...

Brian's sister, Lynn, made a wonderful video of friends and family sending best wishes to Charlottte.  To say it was a hit with Charlotte is an understatement! She would like to make another video for our sweet Charlotte. Her goal is to finish this next video before the end of the month--it would be great to have all videos by 4/22. She has a few that have already been sent to her and we would love to have a whole lot more!  The video should be short ~10-20 sec. Names are good and a sweet or silly message of cheer or love are perfect! Thanks and love to all of you! Lrsaltz74@yahoo.com 720-988-3938

Cousin Meghan helped trouble shoot today. The blog settings are set up for anyone to comment so no need to be a member or register for any type of account. If you find you try to comment and it doesn't post, you need to enable third party cookies. If you are on a mobile, go to settings and safari or whatever your browser is. Then enable cookies. You can then post. Same if you are on a computer. You will need to go to your browser settings to enable cookies. And if you want to view the blog as a web page (as our friend Danielle set up the home page with 2 adorable pics of our girl), then you can click the link at the bottom of the blog page that says "view web version" which gives you a different view. But in any case, it's all about enabling cookies:) we love your cheering, anecdotes, prayers, and encouragement! Helps us feel the deep roots of our support system, each of you. Love to you all

After today's update from Charlotte's doctors, it has become clear that we need to revisit and review our expectations and really our priorities at this time as it comes to Charlotte coming home. It's honest and justified that we want to bring our baby home and all be together again as a family. But the focusing in on that being the "immediate prize" is becoming disheartening when what we need to be more focused on is getting her body back to the healthiest state it can be in so she can continue round 2 of Chemo, and therefore keep fighting and killing this cancer. When the doctors told me this am that they were not satisfied with the results of the heart medication she began yesterday and they wanted to try something else, I was devastated again because it meant we still can't come home. I now realize that is selfish. We want to come home for the sake of our family and also to help lift her spirits and bring her familiar comforts. After digesting this new...

Many have asked about Taylor and Parker. They are doing ok but it has been hard on them as you can imagine. We are learning how resilient kids really are! We have a huge tribe of friends and family helping to care for them while we balance the hospital stays and also Brian working. We are teaching them about Charlotte's cancer in small doses and they are asking good questions and getting lots of TLC. We have some books that the hospital social worker gave us to help siblings understand and cope with this new diagnosis that will effect all of us. As with all things right now, we are taking it one step at a time. Today was a day we tried to provide a little extra normalcy and so I spent the night home last night and then we got some fun us time with breakfast out and Lego convention. Brian was able to take Taylor to her Y Guide troop meeting and both kids are back to school and preschool so those routines will help as well. We have so much loving and caring support in our friend...

Charlotte's white blood cell numbers are on the rise! Her ANC (which is a special ratio with concern to a special white blood cell called neutrophils) went from 0 to 4 to 215 today. So we can say she is recovering from chemo but we need it to keep climbing. In addition, she had several tests (ekg and an echocardiogram) to check her heart and rule out certain concerns regarding her high heart rate. Her heart looks healthy and with other reasons for her heart rate now resolved, the doctors could not specify exactly why her heart is beating so fast. After consulting with cardiologists, the team has determined that the chemotherapy and possibly the tumor's reaction to the chemo could be causing this. This reaction has been seen in toddlers under going chemo and usually self resolves as chemo continues and the tumor continues to die. Her respiration rate is fine and she is feeling fine and so we will begin a low dose beta blocker to help her heart slow down a safer level. High level...