Charlotte's Journey

We are holding on tight to all the positive news regarding her cancers response to the chemo so far as it makes being hospitalized suddenly more tolerable when we know that getting better goes hand in hand with many unfortunate side effects. We were admitted late last night as she spiked a fever and had felt pretty bad most of the day Memorial Day. Although we still aren't sure, there is some evidence that she may be experiencing one of the more unpleasant side effects of high dose chemo, Mucositis. This painful inflammation of the digestive system can occur anywhere along her digestive tract.  She has complained her mouth and bottom hurt:( We can't see ulcers yet but often they are felt before they are seen and we are afraid this is the culprit. This is a common side effect though and the pain can be managed until it clears up. The doctors have said that since her white cell count is currently low, once those counts go back up in the next couple days, we could see a rapid impr

The timing again is a God given gift, today on Brian's birthday, we got great news on the bone marrow results. They only found "scant" (less than 1%) cancerous cells present on her left side. The inital bone marrow biopsy before treatment began showed 30% and found on both sides. There is tremendous improvement here and we are beyond thrilled and amazed. This is simply a snap shot of her marrow and not indicative that it isn't still present in higher numbers in other parts of her marrow, but it clearly shows much improvement which is cause for celebration! What a special day as we celebrate my amazing husband, our son's end of preschool celebration, and now these results. And our girl, again, mirroring what she cannot even understand occurring around her, chants "Keep going! Keep going! Keep moving!" in her playful way as we drive to Parker's preschool celebration/graduation this afternoon. We think she is exactly right: we will "keep going, k

Charlotte continues to show a side of battling cancer that we didn't expect. As if God has wrapped his own protective arms around our sweet girl, shielding her from the war zone going on inside of her little body. She plays. She jokes. She laughs. She sleeps. She eats. She learns. She tests us like a typical two year old. Then she runs circles around the hospital ward wanting all the nurses attention as if every one of them was there to play with her. She plays pretend. She wants to snuggle with her mommy and daddy. She paints and colors. She sings and dances. She is saving Brian and I every day because it is hard to feel sad or sorry for ourselves over  what is happening when we have this happy go lucky little girl to care for. We are so blessed and finding so many blessings that would have been camouflaged if it weren't for Charlotte living them out in front of us every single day. Now it isn't all rose colored. She is battling nausea. She has been confined to a room fo

There is no other way to start this message then to quote our own oncologist: Today's preliminary results show a "REMARKABLE" response. (And that speaks volumes considering these doctors are realists and pragmatic and never paint a rose colored picture for us) Brian and I were sitting with Charlotte as she was coming out of sedation from her bone marrow biopsy when we saw our Doctor hurrying back to us after she went down to pathology to glance at the abdominal CT images we had just taken before the bone marrow aspiration. Although official measurements were not recorded yet, she was pleasantly surprised at the size of Charlotte's tumor. And she called it "remarkable." And then said it was a "fraction" of the size. We will never forget those words. We were stunned. After further analysis, it is apparently 2/3 the original size which means almost 70% reduced! We are still trying to process this information as it is more then any of us could have hop

You know those dreams where you start to wake up and you think to your dreaming self, oh not yet! Just a few minutes more? But it never works because your body is well on its way to awake? Or perhaps when you were a child and you were playing pretend happy as a clam, but your parent called you to come in for dinner? When reality encroaches on your fantasy world? That is how it feels right now watching Charlotte run and play and feel like any happy healthy child, and yet she is not a healthy little girl yet. She still has cancer and a long road ahead with a new chapter in her journey beginning this Friday. And it's a very big and important chapter. Charlotte will begin the first disease evaluations on Friday. She will also begin round 4 of chemo. We will go for an important abdominal CT scan and also a bone marrow biopsy on Friday afternoon to measure her progress. We believe the CT scan will show much progress with regards to the size of her abdominal tumor. We are hoping it has

We have been home for a week! And by home, I really mean it because we haven't even had to go into the hospital for blood work or a clinic check up or anything!! And this means our girl is doing great and recovering beautifully after her 3rd round of chemo. We have a home health nurse who can come to our house for labs and her other needs as Charlotte's doctors have said there is no need to see her this week! How strange it feels to not go into Duke even once this week. Tomorrow it will have been exactly 2 months since we were admitted for evaluation and sometimes it feels like some other lifetime ago. Like a different world was here only 2 short months ago and yet somehow here we are, trying to find some semblance of normalcy among a nightmare in which we cannot awake from. However, for this moment in time we bask in the bliss of the ordinary which is absolutely extraordinary. There have been days along this journey in which Brian and I wondered if we would ever be here again,

Our baby girl is home! She was having trouble keeping anything down today, but after keeping down fluid and a little dinner, we were discharged. And as if we needed another reason to smile, we were blessed with another rainbow to follow home again. (Refer back to our round 1 drive home!!) We feel like God was smiling upon us on our drive home just like after round one...and so we wanted to share our sign from above with our village😘