Charlotte's Journey

This may be a few days early since our official meeting with the Doctor isn't until Monday, but we can't help it. We are so happy and want to share the news with all of you in our village. Duke called today to let us know that Charlotte's bone marrow biopsy is negative, her MIBG scan showed no uptake of contrast (meaning it doesn't show any pockets of active neuroblastoma), and her full body CT scan is clear. This is the best news possible for us going into this next phase. The lack of evidence of disease is what we have hoped and prayed for. And she did it. We got exactly what we hoped and prayed for. We are sitting in the best position going into consolidation. This next phase works best with minimal disease present and that is what Charlotte is showing. Therefore, any cancer cells remaining can be targeted more easily since the bulk of her disease is out of the way. This enables this "intensification of chemo" to do its work in eliminating any remaining n...

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...