Charlotte's Journey

She's home. It's going to take sometime to recover but atleast she gets to do it at home. She'll have several clinic appointments this week starting tomorrow unfortunately, but she needs follow up as her little body is trying to get right again. We have CO2 levels in blood to monitor, many electrolyte imbalances, kidney function enzymens are off, coagulation (blood clotting) timing is high, weight to monitor as she hasn't truly eaten well all week including 3 full days of nothing, diarrhea including C Diff to clear up. She's been through so much. Isn't it strange how her hospitalizations are a little backward? But that is the nature of this beast. Most people have to be hospitalized because they are very sick or hurt and they come home when they are feeling better. But not Charlotte. She feels better then ever before she's hospitalized and comes home feeling like a Mac truck hit her and we spend days and days nursing her back to health. So this week, when...

Today was the first day I have ever heard Charlotte initiate and pray out loud. Her little voice, to herself said "Oh God, please help me!" And I barely kept it together. She was feeling so bad. No three year old should ever feel in such a way that they plead for Gods help. But here we are. I will keep believing and trusting. I have to. We have to walk by faith and not by sight. Instead of coming home today, Charlotte needs to stay overnight for observation. She ended up having a severe reaction to the end of the round and spiked a huge fever of 106.3. She shook so badly I was afraid she'd have a seizure but it was just the worst case of chills I've ever seen. She slept most of today and we observed something possibly never reported so that children being treated going forward won't have such a harsh reaction like Charlotte. The team believes something could have been done differently to spare her this huge reaction at the end and so we are grateful that if Char...

As I try to take a quiet moment to write this update, the "music" of this hospital room tells her story. The blood pressure cuff squeezing and the information relayed chimes every few minutes as our girl is having some blood pressure issues today due to the cocktail of medications she has been given this round. She momentarily speaks nonsense into thin air with her eyes closed and sometimes open, yet she is not awake or aware, as another side effect from the medications making her have lucid dreams and temporary delirium. The periodic pumping from her IV pole has a certain rhythm to it as it helps deliver strong immunotherapy medications which help her immune system seek out and destroy cancer cells, along with the morphine pumping through her veins in order to combat the nerve pain associated. I can hear some chatter in the hallway from the staff. This melody of sorts is the "music" Charlotte has known for all she can remember. It occurred to Brian and I as we drov...

I have just learned that our Pastor Amanda's little baby boy, Owen, whom you have lifted up in prayer many times over the past several months,  passed away yesterday morning. The last I understood that St.Jude asked them to return after he was sent home on hospice care. They did another round of chemo because his cancer growth seemed to have come to a hault and so they did another round with the hopes he would respond. They recovered from that round and were even able to go on a vacation with their families to a NC beach. But he soon became sick and they air lifted him to Duke where it was confirmed that his brain tumor was growing and spreading quickly down his spine. After stablized, he was sent home with his parents where they said their final goodbyes days later. This pain, this devistation, this heartbreak has no words. Whatever words we can find even if they are silent, please keep this family close to your hearts as they go through the unimaginable. Please keep them in your ...

It was a quick turn around! After a wonderful 3 night beach get away, we zipped home Sunday afternoon to unpack, do laundry, grocery shop, and repack for a week away at The Ronald MacDonald House of Durham where Charlotte and I will stay this week as she has her out patient predose infusion.  This round 4 of immunotherapy will be our last stay at the RMH in Durham because round 5 is only inpatient and round 6 is only at home meds!! We are checking off boxes as she keeps going, keeps moving you all! This round 4 mirrors round 2, which was the hardest one for our girl. We are hoping this one is a little easier on her this go around but only time will tell. We are truly feeling all of your continued prayers and loving thoughts for our Charlotte. Finally, I learned through a parent support page today that this week is Neuroblastoma Awareness week. There is a day or week for every cause isn't there? It still sometimes feels like we are walking in a dream. Sometimes, we still clos...