Charlotte's Journey

I've discovered I am better in motion then being still these days. The down time is needed for us all, but in the quiet calm, I have time to think way too much. Mostly, the slow motion build up to this Stem Cell Transplant phase feels like watching someone in front of you prepare for a painful procedure and then slowly walk towards you while you sit there waiting, knowing that it's coming. Its hard to truly relax during this down time because there is this dark cloud of worry dangling out there in front of us. I dig deep trying to enjoy this time home but it's mixed with knots of anxiety in my stomach. It's strange. As much as Brian and I want time to stand still for a bit so we can soak up this time together as a family while Charlotte feels so good, we also want to hit fast forward and be done with the next 3 months during this transplant. But who would ever want to miss these sweet days together while we have them. It's such a strange feeling. Yesterday, we got...

There's an adorable kids TV show called Special Agent Oso (one of my favs) in which this lovable Panda is a special agent who helps solve problems with a child by taking a big task and breaking it down into simple steps to complete. It never goes according to plan and he always says "It's all part of the plan....more or less." I love that. Isn't it true for us all?! Taking out Charlotte's central line because of a potential line infection was definatly not part of our plan. We hoped when it was removed, it would have been a celebration because she was finished with treatment! But the team decided not to take any chances with this stubborn strain of bacteria that could (or could not) be present in her line. So this morning, she was taken to the OR for a quick procedure in which her line was removed. She is currently back in her room recovering from anesthesia with Cheerios and Popsicles:) A temporary IV is in place so she can finish the last doses of her 10 d...

Taking the positive approach over here y'all😊. You know...like when you laugh so you don't cry. We have learned more information today that will keep Charlotte hospitalized through late next week at the least. (This is tough mostly because we are about to be admitted for a month in isolation come September). The potential bacteria strain (a type of bacillus) that she has a lone positive result for and still could be just a contamination issue, has the team not wanting to take any chances going into this transplant. They decided to take a middle of the road approach per say. They only see 1 or 2 cases of this specific bacterial strain a year so they don't have a protocol to test for drug sensitivity to this here at Duke. (it's time to embrace being unique I suppose). Therefore, they sent her culture off to Mayo Clinic and we are in waiting mode to see what medication they recommend to treat Charlotte. Therefore, unless further cultures show up positive, she will NOT nee...

First off all, I spent 15 minutes tonight chasing Charlotte around the halls with her IV pole and that was after she played in the playroom for an hour. Needless to say, she is feeling great and soooo ready to go home but we need her white cells to cooperate and also another unfortunate circumstance that arose today to iron out first. We got news today that one of Charlotte's cultures has shown a second strain of another bacteria species. This species is difficult to treat. If she does have this infection, they would need to perform another operation to remove her entire Broviac (central line) because this strain tends to stick to the hardware. The team has called infectious disease in and also partnered with the bone marrow transplant team to determine best course of action. We don't want to enter transplant with any chance of infection. That could be catestrophic for Charlotte. However, only one culture has displayed this bacteria strain and so there is a chance the sample ...

Charlotte is responding to the meds and has been fever free for 24hours. Her playful and goofball spirit is back as well. Now we need her counts to rise and keep rising. In addition, further info from cultures is needed so we can narrow down her antibiotic but overall she is feeling better! The sudden impatient stay has enabled the team to also run some tests while we are here so that the BMT (bone marrow transplant) unit will have a baseline of all the necessary info before the next phase of treatment begins (various organ functioning like heart and kidney, hearing, developmental, etc). So we are hanging tight and hopefully next update is that we are home, perhaps as early as Thursday if her counts can jump up by then. She is still having some pain in her bottom area and says her mouth "stings" a little, but those side effects from chemo should diminish once her white cell counts are restored any day now. Much love to you all...I leave you with a few pictures from today of...

Unlike my long winded musings...this is a quick update for those praying for our girl. Unfortunately, her cultures came back positive for a gram negative bacterial infection. It was found in one of her two central line(Broviac) lumens ("tubies"). It will take several days to narrow down to the specific species that is causing the trouble so that we can narrow down the antibiotic from broad to specifically treat this infection. It was a rough night last night with very high fever spikes but she was able to complete her blood transfusion which was important. So for now, we patiently wait for cultures to reveal species, fevers to subside, and her counts to go back up. Her white cells are at zero today and so she has no ability to fight off this infection nor keep other bacteria populations in check. But we are where we need to be and have a good plan of action to help her get better. Thanks for your prayers. She woke asking to play toy princesses with mommy so that's a great...

Unfortunately, even if we wrap Charlotte in bubble wrap, she is still likely to be hospitalized for a fever during this part of her recovery from chemo. Although her white cell counts were still good on Friday, they plummeted today and she spiked a fever this morning. She had been feeling so good this weekend we hoped we might skate on by this round. But we are old pros at this by now. Brian brought her in and she has been admitted. Even though this is expected, we hope every time that she will breeze on through and not need to be admitted during recovery. Her red cell counts are also very low and unfortunately during her blood transfusion today she began shaking. She often gets these shakes when a very high fever spikes, but in order to rule out a reaction to the blood, they stopped the transfusion. She is stable and fever is back down to manageable. The tests that were run ruled out a reaction to the blood and so we are now as to receive a new blood transfusion. Once she wakes in the...

When the words "We think we know what is going on with Charlotte. We believe she has Neuroblastoma" came out of the Duke doctor's mouth, I hit the floor. Many parents might have stood there dazed because they wouldn't know what neuroblastoma was. Most have never heard of it before. But I knew. I knew those words because one of my best friends from childhood had a son who had neuroblastoma. We went to middle school, high school, and roomed together in college. I watched her son battle this monster through their blog updates from the age of 5 until he was 11. He went through several remissions and relapses until 3 years ago today, his body had fought enough and he earned his wings. When I heard that our baby girl had neuroblastoma, the world stopped turning and everything became blurry in slow motion. How could this be? How could Charlotte have not only cancer, but the same stage 4 neuroblastoma that my good friend's son had battled so bravely years ago? I cannot ...

6 rounds, 14 Chemotherapies, 197 hours of infusions, 10+hours in surgery, countless blood transfusions, shots, and medications later...Charlotte Annmarie Reynolds has met what was asked head on and tomorrow will be walking away from 5100 (oncology floor) with a smile. As I lie here close to her in the hospital tonight, watching her sleep and dream her sweet dreams, her body is receiving the last few milliliters of chemotherapy in this first phase of her protocol. I want to tell her how proud her daddy and I are of her, but the beautiful thing is that she doesn't know what she has done! She walks in her sassy and confident shoes completely unaware that her body has beaten down one of the most devastating childhood cancers. And although there are still microscopic cancer cells still in her body needing to be destroyed, and our journey is no where near over, the fact that we are at this point in her treatment is not only truly remarkable, but something to really celebrate. The fact th...

Charlotte was admitted yesterday for her last round of chemo in the first phase of her treatment, induction! This is a big milestone! Chemo will last 3 days and if all goes accordingly we should bring her home Tuesday. As you might imagine, it's always hard to bring her back into the hospital after being home, watching her feeling healthy and happy. Returning for this round was by far the hardest so far because we have had a longer break from everything: no hospital clinic check ups, blood or platelet transfusions, medications or fevers or pain for 2 week. Only an occasional home health nurse visit to change her dressing and check her vitals. 2 weeks...felt like 2 months. It was a medical vacation of sorts I suppose. And honestly, we haven't seen Charlotte feel this healthy for this long since before she was feeling sick in Febrary. And there was a part of me that just wanted to keep pretending, like I have many many times. Pretend that she is healthy and that all of this is be...