A new outlook for Christmas

As I type this, Charlotte has been tucked in for the night yet is quietly laying there in the dark chit chatting about who knows what to herself in between singing Katy Perry's Roar. Needless to say, let's take this as a good sign. Charlotte's over all behavior resembles that of a child who is simply feeling better! Perhaps she is presenting before her symptoms catch up because aside from her behavior, we seem to be in limbo here. Today, the doctors seem to be coming to a common consensus amongst themselves with regards to Charlotte's slow recovery, respiratory issues, and higher heart rate. The team had a lengthy review of Charlotte this am they told me on rounds. They are doing another panel today hunting for viruses that could be contributing to Charlotte's complications and slow recovery (in top of the cold/rhino virus we know she's positive for). The team has concluded that in absence of other evidence that they have investigated, they believe what we are seeing is a cumulative effect of Chemo on our little girls body. They assured me that they have seen this and most kids do recover and that we aren't discussing long term chronic complications at this point. You can imagine the hair raising on my neck because  this has been a huge fear all along--That along with the cancer, the chemo would damage her body greatly. Who will ultimately win then: she or cancer? And we have to sit and pray and have time be the teller of this news. Waiting is excruciating. We want to keep moving. We don't want to pause or stand still, but she really needs us to. And I need to pray for my sense of urgency to quell. We need patience and trust and faith now more then ever. When the dr came in to examine her and tell me this, he was so pleased with her behavior (acting like she feels better) and said when kids act like they feel better it's because they ARE getting better. And she has felt much better these past few days even though her requirements haven't changed much. So, they want to do a steroid trial tomorrow (which they rarely want to resort to as it has a host of side effects including suppressing immune system) but they want to see if this helps the inflammatory response they believe they are seeing. Meanwhile, we went down a tiny bit on morphine, she also finished her doses of a couple other antibiotics, and there is no longer blood being detected in her urine. Baby steps? I keep waiting for the nausea to end. She has been throwing up everyday usually several times a day, going on 4 weeks now! And she is not eating so what's coming out is bile and water and mucous (not as much blood any longer now that the mucositis has healed). Her poor belly feels just awful and seems to be the primary source for her pain.

It's time to face that it's looking less and less likely that she will recover in time to be out patient for Christmas. From what we can see, I think we should embrace the fact she will be here over the weekend and most likely well into next week. The true silver lining would be that she's atleast moving in the right direction vs the other direction, which we know could still happen...as hard as that is we can spin a positive light on it. We aren't working toward getting her home for Christmas, instead we are working right now so that she has a lifetime of Christmas's. The true miracle we can now hope for will be her simply healing so we can begin the new year ready to tackle and take on the rest of this treatment that is being required of her. She appears to be fighting several battles on so many fronts right now so extinguishing each and everyone is our focus. Along with trying our best to provide a Christmas season full of love and happiness to all of our children the best way we can. What that will look like right now...we still haven't ironed out those details. But if we set our sights on the finish line instead of our daily difficulties, then we can stay positive and strong and determined. Christmas is about Jesus and I have a feeling we will understand that more so this season then ever.

Even if at a snails pace, please keep getting better baby. We are holding on over here y'all....tested to the max but we are doing it. I think Charlotte figured I needed a big laugh because tonight, when the doctor came in to check on Charlotte, she grabbed his hand and put it on my calf.  "See, mommy leg spiky!", she exclaimed in her little voice. Shaving is evidently not a priority right now 😂. Good timing baby girl...so needed that laugh! We are still holding on in limbo over here❤️🌈 Thanks for keeping up the prayers. We really need and feel them. And also for your uplifting and inspiring comments and/or messages to us. They lift us up and help us cope more then you can ever imagine.

Finally, a special THANK YOU to 2 groups who have honored Charlotte recently. One group was Heather's Cup, from NJ who honored Charlotte in their annual benefit. Heather was a little girl near and dear to Brian's dad Doug and his wife Joanne. She lost her battle to pediatric cancer but remains a huge life force among those she touched. Her mom Wendy and father Meech are good friends to Doug and Joanne. Brian and I have had the privilege of learning about Heather and learning so much from her family and their faith. They raised money for several children battling pediatric cancer, and Charlotte was one of them. We are so honored, humbled, and grateful to have been included in this event. In addition to Heather's Cup, some members of our village have come together recently and also gave a beyond generous monitory gift to our family to help us at this time. To say we were surprised and speechless is an understatement. During our Sunday night switch, Kevin Sweeney asked us to FaceTime with them while we were together. He showed us a beautiful e-card generated with messages from some of our amazing village members and also a check that we could never have expected but we were so overwhelmed and grateful for. We love you all.  With you, with God, with our amazing grandparents (especially Brian's mom Schuey and Neal who have devoted themselves to us and the children at this time), with Duke, and with Charlotte's powerful life force and spirit, we can do this.