Fortitude and Finality: a big decision has been made

For 2 and 1/2 years we have been searching. Searching for answers to questions about how we can help Charlotte during therapy and after therapy. For 2 and 1/2 years, we have been in fight mode. Fighting even when it appeared to all the world who doesn’t know Charlotte that all is “normal” and well. For you can’t tell by looking at her or talking with her that she had beaten down Stage IV cancer and was on a clinical trial aimed at preventing it from returning. Even through every sweet victory that she claimed during these 2 and 1/2 years, Brian and I were still searching and seeking. This was never ending. We kept learning not only about what she was going through, but about what we needed to do next to help her. What else was out there?

This seeking and searching. This never ending part that comes with being the parents of a child like Charlotte. This chapter of our journey helping to heal our baby girl has come to a close. This is hard to say and even harder for us to grasp but here it is:

Charlotte is done.

Unless this disease returns and rears it’s nasty head again during this “watch and wait” window she has entered, therapy is done. Even if late term effects surface that require us to address them and learn how to manage them, our time searching for answers about what is best to keep this cancer away has come to an end. Brian and I have decided not to have Charlotte continue onto the last possible treatment for someone like Charlotte, DFMO. We come to this decision not half hearted of course. There was a fleeting time period where we needed someone to take our hand and tell us that this medication was necessary and important for Charlotte. We didn’t know how to be “all done.” That notion was uncomfortable. I mean are you ever all done? And then we started to swing to the opposite end of the spectrum and felt the selfish tendencies of exhaustion creep in and whisper “don’t you all want to be done? Aren’t you ready for all of this to be over?” And man did we want to listen to that voice too. But we couldn’t. That wouldn’t have been right either. Most of the time we felt drawn towards the center of those two extremes. As much as we felt like we needed another therapy to target potential relapse, as much as we also wanted to be finished with all outside therapies....honestly, we mostly wanted to listen to what made the honest to god best sense for our Charlotte while looking at her as an individual and not a statistic.

After an informative video chat with one of the doctors who helps run the DFMO study here at Levine’s Childrens hospital in Charlotte, North Carolina, we feel a weight starting to be lifted off of our shoulders. This decision was weighting on us. We needed to be sure we had all the important information regarding this study and what it would entail for Charlotte. 3 important, crucial pieces stood out to Brian and I and helped us form our decision to not proceed:

They do not believe DFMO works along the same pathway as the vaccine does, but they are uncertain and can not rule out that it has any counterproductive effects. Could they work against each other? There are very few kids that have done both at this time. There isn’t much information about them.
This team would require immediate and extensive screening evaluations to be sure she is eligible including repeating all her recent scans and bone marrow biopsies that she just had done last month, along with a long list of other evaluations, examinations, and labs. They would require all future monitoring and PK (pharmakinetic) labs to be done at Levine which would mean moving her care there for the next 2 years while she is on the study.
Relapse, as horrifying as that would initially be, is no longer a death sentence. There are many options that help kids get back into remission. If Charlotte were to move onto DFMO at this point, and her cancer to return, she may not be eligible for this as maintenance therapy in the future. Because the vaccine she received should “theoretically” cover her long term, the DFMO doctors feel this medication isn’t necessary for Charlotte at this time and could prevent her from accessing it in the future should she need it then. We hope to never cross this bridge and that Charlotte isn’t on any of these doctors radar, but we don’t want to exclude her from anything that could benefit her if she needed it either.

We wish we had a crystal ball. How many times have we felt this? I know you all have felt this in your own lives as well. We wish we knew that this vaccine trial even worked for our girl. We weren’t allowed access to her data. We don’t know if she’s making the right antibodies in the right amount. We don’t know if there is any cancer lingering, hidden, waiting to resurface over the next couple years. We don’t know if what she’s already been through will cause serious health complications for her. We don’t know if our decision to not continue on to the 2 years DFMO study is the right one. We don’t know if we should have signed her up for DFMO to begin with after frontline therapy instead of the vaccine. But we do know this and THIS is what we cling to:

Brian and I said this after we made the decision. Whatever may be, we promise ourselves we will not look back with regret. We made this decision with the best information we had in hand, taking into consideration Charlotte as an individual not as a statistic, looking at HER and what is best for HER RIGHT in this moment in time, right in this window where the decision had to be made. And we have decided to go forward. To keep moving forward just like our Charlotte has done all this time. We think if she could understand and tell us anything to help us, she would say to us with a smile “I’m okay mom and Dad. I’m okay.” I write this grinning ear to ear sitting on our couch by the light of our Christmas tree because Charlotte kind of does that every day in her own little way. I catch myself looking at her like she’s under a microscope. Just as I start to worry about this or that, God has a way of helping to comfort those worries and he does this through her. And she calms my fears and worries. Simple case in point from just today—in the car on the way home from a follow up ENT and Audiology appointment at Duke:

I’m driving and very quiet.

Charlotte:”Mommy? You’re quiet.”

Me:” Charlotte? Do you ever feel like you have a hard time hearing? In school or at home?”

Charlotte:”Well I hear fine at school momma. I hear my teacher and my friends.”

Me: “Ok and what about at home?”

Charlotte: “Sometimes. But that’s cause I try to understand the conversation and I don’t always understand what you all talkin’ about. I hear the words but I don’t always know what you mean.”

Typical Charlotte. THIS was my exact thought and worry today when talking about what hearing loss we have identified in Charlotte. I wondered if the clarifications we noticed her needing was a language issue not an issue a hearing aid would solve. I wondered this because she is so alert and always wanting to know what everyone’s talking about and in our 5 person family, that tends to often talk at a rapid rate, she can feel lost in our conversations. They can go right over her head and she doesn’t like that! She wants us to explain! Explain not because she can’t hear us in a way she can understand but because she is likely acquiring language at a very rapid rate and she’s having trouble keeping up sometimes. I was driving home and thinking of everything and although this thought was in the back of my mind and another reason why we want to wait to get her hearing aides to be sure she really needs them to succeed, she helped soothe this worry. I believe this is another way we encounter God. In the quiet deep thoughts or worries, there He is sending us guidance. Now this doesn’t mean Charlotte won’t need hearing aides, we have yet to determine that. She does have some hearing loss. But we do believe we do not need to jump into that at this moment in time with the information we currently have in hand.

There is a foreign, light weighted feeling we have now that we are in a new no mans land. Off therapy, no longer on a trial (although still being followed by the vaccine study along with monitoring requirements). This is new terrain. And as frightening and foreign as it feels to not be actively fighting this cancer in some way, it feels somewhat sweet to just be focused on preventative type things like diet and supplements and just letting her LIVE like a normal 5 year old little girl with all that that entails—dress up play with mommy’s make up, skinned up knees from playing chase, messy hands and tables from her latest arts and crafts, butterfly kisses to daddy and Mommy while curled up snuggling in her own bed at bedtime, the magic of Christmas....the first one in 2 years where she didn’t have December scans and hospital appointments for treatment or the clinical trial.

Charlotte is all done. God, let her forever be all done. And somehow, let her help Brian and I be all done too, and to feel the contentment in which the finality of that decision brings.

Baking for Thanksgiving with Mommy ❤️

Charlotte’s Preschool Thanksgiving Feast. Her Native American name is Smiling Rainbow

Hot cocoa and candy canes on our boat pretending to be out o the water (flooding still a factor at our lake and we couldn’t take it out over Thanksgiving weekend like we hoped)