Charlotte's Journey

This may surprise those who know me well, because I can be somewhat a friendly, social butterfly who makes fast friends, but I have preferred to stay in my own bubble while going through treatment here at Duke. I rarely make small talk let alone deep conversations with other parents and family members we see. I can count 2 people I've really spoken with. One was a mother of a son being treated for leukemia that Charlotte befriended whom we would see while undergoing chemo. We even saw them through the isolation window last week and the 2 children played by pressing hands against the window with each other while the mother and I chit chatted. And another was a grandfather I met once at a clinic check up as they were going through early diagnosis after transferring here from St. Jude's for a brain tumor in their 4 year old. I was immediatly drawn to him because he was drawn towards Charlotte. He lit up watching her play with her little bald headed self, happy as could be in the m

I hate to say this, but Brian and I are starting to get the feeling this is going to be much harder then we could have anticipated. And that is with everything so far going as expected and the doctors not at all surprised by how sick our little girl is quickly becoming. She currently has a high fever along with pain in mouth, stomach and bottom area, bone pain, nausea, diarrhea, and some blood in her vomit from mucositis. I worried about Charlotte being in pain but didn't realize there would be something that would be even harder to watch. That something is her spark, her light being slowly dimmed. What I didn't consider was this being traumatic for her and the psychological and emotional difficulties she could have. And besides the physical pain, she is also beginning to suffer some emotional and psychological distress. This is almost harder to watch because there is no medicine that can help her through that. That is Brian and I's job. And we are trying to get it right.

Charlotte's stem cell transplant went as planned! So far, everything here is going as expected. She received her baby stem cells mid day and we watched for about 45minutes while they slowly entered her body to begin their magic. She slept through the whole thing and was confused by the certificate they presented her haha. Transplants are a big deal around here for obvious resons as they are life saving. For us, it felt like step one of 2 in the transplant process since she will need a second transplant after more chemo in November. But we still celebrated this milestone! Now we watch for her to engraft, basically her body's response indicating bone marrow production and blood cell production is occurring. She will have a rough next 2 weeks they tell us. So far, we are just battling nausea and what older kids describe as what feels like the flu. But medications are helping her and we also began TPN, which is nutrition given through IV. It goes through her central line and will

Duke Children's published an article I wanted to share. This is our Doctor here in the bone marrow transplant unit, Dr. Driscoll. A couple weeks ago during a pre-admission meeting, we needed to hear a story of success and I think he realized that. He shared with us that he just moved his son into college and he ran into an old patient also moving in to begin college. We needed to hear that in that moment and visualize this for Charlotte. Yesterday, this story was published by the mother of this same patient! What a beautiful story. I love this little girls spirit. Her cancer was different and we are also here 10 years later which means many medical advancements have occurred since her days Going through treatment, but the way this mother felt spoke directly to my heart. And the envelope she finds...I can't even....We pray and believe our Charlotte also gets to go to 'calage' (if that's what she wants) and buy a car❤️🌈 http://smithellaneous.com/a-car-and-calage/

"Quick" update: (my posts are rarely quick please forgive me😁❤️🌈) A) her fever went down yesterday and she's fever free today! Fevers can occur for so many reasons while she is going through this, but protocol has her on another antibiotic now. So, we have more bases covered while her counts are dropping drastically and she will have no immunity for several weeks. Thanks for those prayers! They worked and it was a nonevent. Although fevers are routine in this unit, we will worry with each one and pray it doesn't indicate something major. B) Today was Charlotte's last dose of chemo for this Transplant! This chemo has made her more sick then any other so far. She's unable to keep down solids or liquids for almost 48hrs now. Anti-nausea medications seem to take the edge off so she can still get up and play some, but they aren't keeping her from throwing up unfortunately. Our tough cookie keeps opening her mouth to try and eat though! She is a foodie by n

Knowing there will be hurdles and praying they don't turn into mountains, we conquer one thing now to have something else pop up. But we can tell this is how it will be going through this. She has finished the around the clock bathing every 4 hrs so yay! The first chemo is finished and today was day 2 of the next chemo, Cytoxin. We finished the last bath this afternoon.  These baths were not pleasant baths by any means but quite upsetting because we don't want her soaking in the chemo we are washing off her skin so basically they are just spray downs with the shower head and soapy scrubbing with wash cloths. But I like progress so we shout "MISSION COMPLETION!" and check that off our list. Those that know me know how I love checking things off lists ha! And now that we don't have to bathe twice in the middle of the night she can get a full nights sleep...perhaps. Unfortunately, nausea has begun and also a low grade fever this afternoon. She is having trouble kee

We are all settled in to our home away from home in 5200 bone marrow transplant isolation unit here at Duke Childrens. Yesterday, she went to the OR to have her central line put back in and also an NG tube (naso-gastro) put in which the team anticipated she'll need soon after we begin this chemo. Although she is not pleased to have this temporary tube in her nose, she is tolerating it well so far.  She is meeting all our new nursing staff and of course they are falling in love with our Charlotte. So today we jumped! She began her first of several very high dose and intense chemotherapies. This first one is actually mustard gas and will secret through her skin potentially causing burns that could vary in degrees. To avoid infection and pain from a bad chemical burn, she will need to be bathed around the clock every few hours for 4 days. To bath her involves many steps and is not quick so unfortunatly we will have a pretty tired and cranky Charlotte on our hands in another day or s

If Charlotte could write a letter, I think she would say something like this.....well if she wasn't two;)- I know this medicine is making me better.  I can run and play and my body doesn't hurt like it did 6 months ago.  I know they can measure this by the tests and scans.  I know they can see this.  But what they cannot measure is what they cannot see.  They cannot see what worked in parallel with this medicine.  They cannot measure the love I feel from my family, and the pure joy that is in our home.  They cannot measure my determination to BE WITH and keep up with my brother and sister, my drive to grow up with them.  They cannot measure the faith my parents have and in their faith there is a trickle down effect that truly works in conjunction with all of this modern medicine.  They cannot measure God's presence and his hand in what I have done.  So starting today, they will begin many many new "measurements" to help them understand this cancer and my body